Finally getting off Preds

[freakyschizogirl]

Thanks Rose Cozette....i see my GP next week so i will ask her advice.

[Rose Cozzette]

HI Rose I am on cellcept 2000mg and I am doing good. I do take culturell for the stomach. I even take Bactrim DS daily. Glad your doctors are keeping a close eye on you. Isn't it wonderful to see 20/20! it is wondrous to be able to see so well! getting used to wearing my reading classes around my neck tho.

[Rose Cozzette]

it is wondrous to be able to see so well! getting used to wearing my reading classes around my neck tho.i meant glasses.

[Rose Cozzette]

Hi all...gonna come slightly off topic here...My pred dose has come right down now...I'm on 10mg a day so do i still need to take my 20mg Omeprazole acid blocker?? Cos doing the math here...i dont think i need it. Hi, did you see the doc yet this week?

[freakyschizogirl]

I did Rose Cozette and i completely forgot!! She did look at my meds tho and didnt say anything...

[Rose Cozzette]

I did Rose Cozette and i completely forgot!! She did look at my meds tho and didnt say anything...well typical i guess. keep on them as you feel you need to, ask questions until they get used to the fact that you expect answers. they always assume you are a typical pt. and dont want to know. of course as yu well know, thereis nothing typical abt us weggies!

[Rose Cozzette]

I did Rose Cozette and i completely forgot!! She did look at my meds tho and didnt say anything...well I am down to 10 mgs of preds and ready to increase cellcept to 750 BID so hopefully it will be ok. feeling better on less preds. how's it going with you?

[DEE]

great news Rosa glad its working out with your tappering keep up the good work:thumbsup:

[Rose Cozzette]

great news Rosa glad its working out with your tappering keep up the good work:thumbsup: thanks, I always hold my breath cause you never know! lol

[elephant]

Rose one day at a time. You will slowly get off prednisone...it may take awhile.

[Rose Cozzette]

Rose one day at a time. You will slowly get off prednisone...it may take awhile.yeah, I know. the cellcept is making my head feel woozy now, dont like that. but the good news is that my stomach isnt much bothered by the increase. and started having spasms in my back, dont know what is causing that. heat is helping it. i know, one day at a time. :unsure:

[freakyschizogirl]

well typical i guess. keep on them as you feel you need to, ask questions until they get used to the fact that you expect answers. they always assume you are a typical pt. and dont want to know. of course as yu well know, thereis nothing typical abt us weggies!

I know that i caught out my chest consultant. He was talking about my condition and he was surprised how much i knew...especially when i asked what my PR3 was. And when i told him i wanted a referral to Addenbrooks he said no problem just need to find out the name of a consultant. I said i already know who i want and this is his name, he was so shocked! He paused to take in what i had said. So funny

[Rose Cozzette]

I know that i caught out my chest consultant. He was talking about my condition and he was surprised how much i knew...especially when i asked what my PR3 was. And when i told him i wanted a referral to Addenbrooks he said no problem just need to find out the name of a consultant. I said i already know who i want and this is his name, he was so shocked! He paused to take in what i had said. So funnygood for you! keep it up...

[DEE]

Well done Rose i think been a weggie makes us more determined keep up the good work :thumbsup::thumbsup::thumbsup:

[Hammy8241]

I know that i caught out my chest consultant. He was talking about my condition and he was surprised how much i knew...especially when i asked what my PR3 was. And when i told him i wanted a referral to Addenbrooks he said no problem just need to find out the name of a consultant. I said i already know who i want and this is his name, he was so shocked! He paused to take in what i had said. So funny

See what happens when you are a member of this forum......... knowledge is king...or queen........freaky or wot!!:scared:

[elephant]

I noticed some docs don't like the fact we are knowledgeable....had a experience with one other doc recently.....he cut me off because I think I knew more than him...hee, hee, hee!

[DEE]

Good one Elephant :thumbsup::thumbsup:

[Sangye]

Great job, Freaky. I admire how much you've learned in such a short time. :smile1:

[Geoff]

Nice one Sam, hope you get the attention and treatment you deserve! See you there one day?

[Rose Cozzette]

I noticed some docs don't like the fact we are knowledgeable....had a experience with one other doc recently.....he cut me off because I think I knew more than him...hee, hee, hee! ooweemama, I love that we are not defeated not only by this illness but not by the medical staff either. everybody together now-hut hut hut... who knows, we may very influential in changing how pts. are treated from now on. after all, we didnt get this for no reason, we are to teach others. :hug3:

[Rose Cozzette]

Great job, Freaky. I admire how much you've learned in such a short time. :smile1: I am trying taking the cellcept closer to meals and it seems to be better for my stomach. thx. and Happy Thanksgiving to all my weggie friends!! :biggrin1:

[freakyschizogirl]

lol thanks guys...you crack me up!!

I am so grateful for the knowlegde and experience of everyone of you on this forum. Its helped me so much.

And i decided a long time ago i'd rather be well informed than a hypocondriac. lol.

And i will ALWAYS challenge Docs over my care. I was lucky in the 3 years they knew i had an active disease to getting the confirmation of Wegs that i didnt get seriously ill. It could've been a completely different story.

[Sangye]

I am trying taking the cellcept closer to meals and it seems to be better for my stomach. thx. and Happy Thanksgiving to all my weggie friends!! :biggrin1:
Rose, I always took cellcept with meals. It helps with the GI issues. My docs were okay about it.

[pberggren1]

I am having some really loose stools lately and am wondering if it could be due to the Cellcept. In the past I have tolerated the Cellcept quite well and had no GI symptoms like diarhea. Maybe it is just the antibiotics. I did just up the Cellcept from 500mg per day to 2000mg per day, but I am sure that the loose stools started before I upped the Cellcept. I have always taken the Cellcept as instructed on the med sheet I get from the Pharmacy. I take it with plenty of water at least one hour before and 2 hours after a meal. A thought just struck me. I have been eating a little more dairy than usual the last few days, mostly milk and yogurt. But I have tolerated dairy very well in the past and has never given me any problems. I even cut out dairy for a few months at a time twice to see if the mucus production let up, but no difference found. I just realised too that I have not taken my probiotics for quite some time now, like about 2 months. So maybe that might help with the gut.

[elephant]

Phil its probably the antibiotics and cellcept together giving you the diarrhea. Just let the doc know, you don't want to get malnourished and the meds might not be absorbing.

[Sangye]

Phil, you have to stay on the probiotics. It sounds to me like the antibiotics finally killed off enough gut flora to cause a problem. You can get in serious trouble by not maintaining some semblance of normal flora. Even someone taking one course of a regular antibiotic could get in major trouble without probiotics. And the stuff you're taking is way beyond regular!

[pberggren1]

Thanks Elephant and Sangye.

[Rose Cozzette]

I am having some really loose stools lately and am wondering if it could be due to the Cellcept. In the past I have tolerated the Cellcept quite well and had no GI symptoms like diarhea. Maybe it is just the antibiotics. I did just up the Cellcept from 500mg per day to 2000mg per day, but I am sure that the loose stools started before I upped the Cellcept. I have always taken the Cellcept as instructed on the med sheet I get from the Pharmacy. I take it with plenty of water at least one hour before and 2 hours after a meal. A thought just struck me. I have been eating a little more dairy than usual the last few days, mostly milk and yogurt. But I have tolerated dairy very well in the past and has never given me any problems. I even cut out dairy for a few months at a time twice to see if the mucus production let up, but no difference found. I just realised too that I have not taken my probiotics for quite some time now, like about 2 months. So maybe that might help with the gut. it most definately is the combination of cellcept and antibiotics, I would take imodium if it got bad and that helped, just one days dose. and i had to stop taking yogurt cause iI was in the batroom. I can take it occasionally now. thats a big jump to 2000 of cellcept so it takes a while to adapt to it, it takes me abt 2 wks for my system to settle down. good luck with our suggestions.

[Rose Cozzette]

lol thanks guys...you crack me up!!

I am so grateful for the knowlegde and experience of everyone of you on this forum. Its helped me so much.

And i decided a long time ago i'd rather be well informed than a hypocondriac. lol.

And i will ALWAYS challenge Docs over my care. I was lucky in the 3 years they knew i had an active disease to getting the confirmation of Wegs that i didnt get seriously ill. It could've been a completely different story. got my latest blood work back and see some improvement across the board, GFR is 40 but white blood count remains at 13000. guess this may be due to the meds? it never goes below 12000. liver scores are good. finally head feels clearer. how are you doing?

[Rose Cozzette]

Phil its probably the antibiotics and cellcept together giving you the diarrhea. Just let the doc know, you don't want to get malnourished and the meds might not be absorbing. are you getting my email? I don't seem to be getting any replies from anyone. I now have shingles, joy of joy. quite uncomfortable but do have meds and pain patch to reduce the discomfort. hard to sleep at night, can't get in the right spot. sigh...

[elephant]

Hi Rose, no I have not gotten you email? I am so sorry you have Shingles, that is horrible. If you can't get pain under control ask your doctor for a Pain consultant. Is you mail box full Rose, you might have to empty it. How are you otherwise re: life and WG?

[Sangye]

Aww Rose, I'm sorry to hear you have shingles. I hope it clears up soon. Take very good care of yourself. :hug2:

[Minneapolismark]

Wow! It is great to know that it is possible to get of preds! I am definitely NOT loving that drug.

[JanW]

It is not only possible, Mark, it is in fact the recommended course of treatments. Experts at the symposium said that patients should be looking at only 3 to 6 months treatment with pred, but, in fact, only 3 to 6 months treatment with a "stronger" medication (e.g. ctx or rtx) with a planned step down to mtx, immuran, cellcept. Some people can get away with not going on pred at all (me), although that is the standard protocol so I would NOT attempt that with the 'local rheumy down the street"

Doctors believe that there are some patients who may not be able to live in long term remission with immunosupression, but none believe that pred should be the main driver of that immuno suppression.

[Minneapolismark]

Good to know. I am trying very hard to get off preds. All the way down to 20mg/day now! Big drop from 70mg. It has NOT been good for my waistline!

BTW, what is the conference or symposium that is occasionally referred to on the site? I would be very interested in attending any such gathering that may provide useful information and contacts.

[JanW]

It is the vasculitis foundation's symposium. It's held every two years and I went this year -- it was in Long Beach CA. I'm sure you can probably see talks etc. from it up on the VF's website now. My ENT spoke and I also got a chance to see many of the docs of the Weggies here -- including Seo and Langford. Lovely people and they love Weggies! We dominate the conference, even though about a dozen other diseases are represented under the vasculitis umbrella. They did this to try to move WG and the others out of 'orphan' status. Didn't work!

[vdub]

It has NOT been good for my waistline!
I'm not on any *sone because of wg, but I'm on cortef (30mg/day) for the pit (or lack of). I gained 40 pounds almost over night. It was extremely devastating to me to have to go out and buy new clothes. I kept thinking "gee what a waste of money, this is just a temporary situation", then reality hit....

[Dumpy]

Sorry about taking so long to get back but my BFF really threw me for a little bit of a loop. My Pulmonoligist called last week and after getting the additional blood work back (Proteinase 3) it is a flare up. I am going in tomorrow to have a CT scan to check if there has been any damage done to my lungs. I saw my ENT Friday and my sinuses are doing good which is one thing that really gave me fits originally. I'll have more blood work done on Tuesday then I see my doc again on Wednesday. He has already up my preds to 60 mg a day and put me back on immuran 50 mg a day.
My flare up started with my joints in my knees which i thought at the time was maybe arthuritus but as it progressed it got into all of my joints randomly moving around from 2 to 3 at a time. Then my muscles in my calves got extremely tight and swollen to the point i could hardly walk and it took the full 60 mg of preds to get my BFF to back off. Feeling better now and just waiting to meet with my doc.

[Sangye]

Oh Dumpy....I'm so sorry. :sad: I hope your lungs are okay so you can just stay on imuran and pred.

I'm concerned about your calf muscle tightness and swelling. Those are classic symptoms of blood clots, which we are 23% more likely to develop than non-Weggies. Did your doc rule out clots using ultrasound? The predisposition to clots is well-known with certain AI's, but not with Wegs. Unless he's a Wegs specialist it's unlikely that he'd know about it. Ask if he's familiar with the "WeCLOT" Study. If he hasn't ruled them out using ultrasound, this is a call you need to make first thing Monday morning.

Hugs to you in the meantime.:hug2:

[Dumpy]

Sangye I saw my Doc last week but at the time I didn't have the swelling in the calf muscle until about the first of this week. Then my ankle had some swelling just yesterday morning. I will call my doc in the moning and let him know so while they are running test they can look at all of it. Thank You for the advise.
You know I always thought I would be ready for my BFF when he decided to visit but it was totally different from the first attack.
The Doc that I have is a really good one. He is the one that the Wegs specialist was really supportive of and he has not hesitated about getting on top of it this time. He has told the nurses what ever it took to get me worked in for the test to do it. Which is really good when it is right on top of Christmas. A lot of Docs will let you set until after the Holidays.

[elephant]

Dumpy I had the same thing last year and the ultrasound ruled out blood clot in left leg. Hope you get it checked out soon.

[Dumpy]

I have to do a CT Scan tomorrow so hopefully when I call the nurse in the morning they can schedule a ultrasound while I'm at the clinic.

[elephant]

Lets us know how it went! Good luck!

[Rose Cozzette]

Aww Rose, I'm sorry to hear you have shingles. I hope it clears up soon. Take very good care of yourself. :hug2: Thank you, Sangye, it's clearing up. the meds really helped shorten the duration.

[Rose Cozzette]

I have to do a CT Scan tomorrow so hopefully when I call the nurse in the morning they can schedule a ultrasound while I'm at the clinic. hope it clears up real soon. I had clots twice and was not pleasant but does pass. had to do bed rest totally for 3 days the second time. on 21 mgs of warfarin now weekly.

[Rose Cozzette]

Hi Rose, no I have not gotten you email? I am so sorry you have Shingles, that is horrible. If you can't get pain under control ask your doctor for a Pain consultant. Is you mail box full Rose, you might have to empty it. How are you otherwise re: life and WG? Hi, the shingles are almost gone, the meds to shorten the duration helped and esp the pain patches stopped the pain and the itching. was mainly on my left side back and upper left leg. otherwise doing ok, did more prep for Xmas and baked so feel better abt that but wich the tiredness would go away.:huh:

[Dumpy]

Went back for the CT scan reports and there has been no change in my lungs so as for now it apppears that we caught my BFF in time. There has been no changes in my kidneys. My doc has raised my Preds to 60 mg a day and is raising my immuran up to 100 mg this week then up to 150 next week. He seems to think he will be able to ramp me back off the preds in 6 to 8 weeks, the leave me on the immuran for a longer period of time this time.
I never thought I would say this but I am glad the preds were around to knock out the joint inflamation and pain because as a lot of you know this BFF can be curel at times.

[Sangye]

Glad your lungs and kidneys are doing well and that you caught this flare in time, Dumpy. You can taper off pred from 60mg in 6-8 weeks as long as you get below 20mg within the first 3 weeks. (The adrenals shut down if you've been on at least 20mg for at least 3 weeks.) If the adrenals don't fully shut down you can finish the rest of the taper quickly as planned. If you go past that 3-week point on higher than 20 mg, you have to taper much more slowly to avoid adrenal crisis.

It should be fine, since you'll be up to the full dose of imuran by next week.

[Dumpy]

I hope so. I go back to see the doc on Jan. 5 and he should start me back off of the preds then.

[Rose Cozzette]

yeah the preds does do the job even tho we dont like it much. the first time the doc siad he had to raise mine to 50 I said no and we had a few words, but of course I did it. sigh... hope all goes well with you, Dumpy.:thumbsup:

[Rose Cozzette]

Thank you, Sangye, it's clearing up. the meds really helped shorten the duration. starting to decrease the preds slowly so hope all goes well. :unsure:

[jola57]

Good luck and stay positive

[Sangye]

That's great news, Rose. :thumbsup:

[Dumpy]

Went in for my checkup Wednesday and my Sed rate is down to 19 but my creatinine was at 1.34. Doc wants to leave me on the 60 mg preds for another month and monitor my creatinine every 2 weeks then see where it is. My creatinine was at 1.47 during my original battle. Hopefully everything will get back straight.

[elephant]

Sorry you have to be back on 60 of prednisone. Your creatinine is not that high. 1.34 mildly elevated. Being on prednisone that high( 60mg) can cause the creatinine to be elelvated. Dumpy what are you on besides prednisone to keep the WG quiet?

[Dumpy]

I'm also on 150mg immuran and bactrim 3 times a week. I had a flare around Thanksgiving.

[elephant]

The Bactrim can also increase your creatinine and if you have alot of muscle mass that can increase your creatinine. Meaning that your creatinine is withing normal limits. I was told by my kidney transplant surgeon that some people who have more muscle mass..ect can have creatinine of up to 1.3, and be considered normal. Was you flare small? My creatinine is always 1.0, so when mine crept to 1.2, I freaked out. Serveral of the docs told me that it was high because of the 60 mg of prednisone and other meds that I was on to decrease the WG flare.

[Rose Cozzette]

I'm also on 150mg immuran and bactrim 3 times a week. I had a flare around Thanksgiving. it's such a balancing act to get the meds right. is your doc consulting with other docs or at least seeing all the lab work done by them? I finally got my 3 docs to talk more to each other simply by always asking if they had gotten the others lab results and to please talk to them abt the results. I also hand carried copies of the results to hand to them in case they had not gotten any. nag nag nag and it works. just one of the docs minds that iI do but hey, it's my life! hang in there.

[Rose Cozzette]

Good luck and stay positive
thanks, feel a little achier butis also a lot colder now. sleep more but have a lot of goofy dreams. lol

[Rose Cozzette]

That's great news, Rose. :thumbsup:
thanks, hope some wt. can come off now and sure would be nice to have more energy again.

[Rose Cozzette]

I'm also on 150mg immuran and bactrim 3 times a week. I had a flare around Thanksgiving. I checked my last lab scores and my creatnine is staying around 1.3-1.4, my kidney doc said he didnt think it would ever be Normal since weggie doesnt go away but is controlled. feeling side effects from decreasing the preds now, on 66 mgs a week. anyone else see this happen when you get below 10 a day? what a merry-go-round...

[Sangye]

What kind of side effects are you feeling, Rose?

[Rose Cozzette]

What kind of side effects are you feeling, Rose?I'm feeling more achiness and my sleep got goofy again. but then I got sick with something, sinus headache and more green junk coming out of my nose, so went to doc and he thought i picked up something since many in our area are sick . so on amox. caluvent in high dose. it has its own side effects, esp. stomach, been on it for 3 days and feel slightly better tho not good. had no fever, did feel cold, eat ok tho less and blood pressure has gone down some. so the ongoing conundrum of what is it! never know with weggies, i thought maybe starting a relapse since it was sinus llike before. ??? doc said he would talk to rheumy doc and get his take on it. no energy again so doing very little. sigh...

[DEE]

Ruse thats just how ive beem since tappering to 10mg preds rang doc on fri , have to ring him on wed if no better
for some reason my main pain in my hands and wrist :confused1:
just about managed am and back to sleeping part of pm
just like you hoping things will get better if not einging wg on thursday
PLEASE TAKE CARE OF YOU DEE x :hug1:

[julia]

I checked my last lab scores and my creatnine is staying around 1.3-1.4, my kidney doc said he didnt think it would ever be Normal since weggie doesnt go away but is controlled. feeling side effects from decreasing the preds now, on 66 mgs a week. anyone else see this happen when you get below 10 a day? what a merry-go-round...

My creatnine is usually around 1.3-1.4. My doctor is happy with this. The counts do on occasion go higher. I think I over did it with activity and diet around thanksgiving and during december. My numbers went up to 1.75. I saw my nephrologist for a scheduled appointment. She said if it did not go down we would run more tests. (i test every 2 weeks). I paid close attention to my diet and got plenty of rest, on the following test I was back down 1.35.

I was a bit concerned I may be flaring, I asked her if reducing the pred would cause the numbers to go up. Since I had been on the same dosage about 1 month she did not think it caused it . (or she did not think reducing the pred would cause it at all.) (I am not sure).

It was easy to slow down when I did not have any energy, but as I start to feel better overall I need to remember I can not push my self like I used to before diagnosis.

[drz]

My creatnine is usually around 1.3-1.4. My doctor is happy with this. The counts do on occasion go higher. I think I over did it with activity and diet around thanksgiving and during december. My numbers went up to 1.75. I saw my nephrologist for a scheduled appointment. She said if it did not go down we would run more tests. (i test every 2 weeks). I paid close attention to my diet and got plenty of rest, on the following test I was back down 1.35.

I was a bit concerned I may be flaring, I asked her if reducing the pred would cause the numbers to go up. Since I had been on the same dosage about 1 month she did not think it caused it . (or she did not think reducing the pred would cause it at all.) (I am not sure).

It was easy to slow down when I did not have any energy, but as I start to feel better overall I need to remember I can not push my self like I used to before diagnosis.

Do you test your creatinine every two weeks? What causes it to fluctuate? Do you also get a percentage of normal kidney function reading? My numbers are fairly similar to yours and I get concerned when numbers indicate decrease in kidney function. What diet restrictions do you use to help your kidneys?

[julia]

Do you test your creatinine every two weeks? What causes it to fluctuate? Do you also get a percentage of normal kidney function reading? My numbers are fairly similar to yours and I get concerned when numbers indicate decrease in kidney function. What diet restrictions do you use to help your kidneys?

I am not sure why the creatnine fluctuates.

Yes it is checked every 2 weeks. There are a few tests listed I do not remember all the names and what they mean. They neph. always tells me how my creatnine has been doing so that is really all I pay attention to. (I request the report from the lab, sometimes I get it sometimes not. i have googled the other tests listed but I really do not remember what they mean.)

I try to limit protein and salt.

During the holiday season I was eating everything around and most of it was not good for me. Too many cookies, Dips, processed foods, fast foods. Alot of big meals. I was doing to much.

[Rose Cozzette]

Ruse thats just how ive beem since tappering to 10mg preds rang doc on fri , have to ring him on wed if no better
for some reason my main pain in my hands and wrist :confused1:
just about managed am and back to sleeping part of pm
just like you hoping things will get better if not einging wg on thursday
PLEASE TAKE CARE OF YOU DEE x :hug1: I also have more pain in the hands and wrists, and forgot to say that my feet feel funny at night-jitterylike and i want to shake them, but that doesnt help. I do yoga stretches daily and I think it helps some. feeling better now from whatever I had, tho in the bathrm alot with loose bms. finally had some energy today. hope to try 1mg less of preds next week. am doing it every other day decrease per dr suggestion. since the antibiotic is helping it makes me wonder if we dont get infections due to suppressed systems but have to be careful abt how often to take antibiotics. oy did rest for 5 days as energy went out the window.

[Rose Cozzette]

My creatnine is usually around 1.3-1.4. My doctor is happy with this. The counts do on occasion go higher. I think I over did it with activity and diet around thanksgiving and during december. My numbers went up to 1.75. I saw my nephrologist for a scheduled appointment. She said if it did not go down we would run more tests. (i test every 2 weeks). I paid close attention to my diet and got plenty of rest, on the following test I was back down 1.35.

I was a bit concerned I may be flaring, I asked her if reducing the pred would cause the numbers to go up. Since I had been on the same dosage about 1 month she did not think it caused it . (or she did not think reducing the pred would cause it at all.) (I am not sure).

It was easy to slow down when I did not have any energy, but as I start to feel better overall I need to remember I can not push my self like I used to before diagnosis.
boy to have some energy that lasts! I think that is what bothers me so much, being so limited. my pm is spent doing very little as it's gone by then.

[elephant]

ROse, get back to feeling better. Let your Rhuemy know about your hands and wrist. You may not want to decrease you prednisone if it is a Wg flare.

[Rose Cozzette]

ROse, get back to feeling better. Let your Rhuemy know about your hands and wrist. You may not want to decrease you prednisone if it is a Wg flare. I thought of that. my regular doc was supposed to contact him so hope he did. my rheumy is bad at communicating w/anyone. will hold off until talk to him.

[DEE]

Rose symptoms just the same as yours hand pain so bad can hardly use by late evening
by pm no energy slept most off weekend away !!!
so spoke to gp this morning going back 12mg from 10mg for a week then down 1mg at a time if things ok
take care of you DEEx

[Rose Cozzette]

Rose symptoms just the same as yours hand pain so bad can hardly use by late evening
by pm no energy slept most off weekend away !!!
so spoke to gp this morning going back 12mg from 10mg for a week then down 1mg at a time if things ok
take care of you DEExwell pooh, sorry it got so bad. I found that if i run warm warm water over my hands it helps some. hope it gets better, let me know.:hug2:

[DEE]

well pooh, sorry it got so bad. I found that if i run warm warm water over my hands it helps some. hope it gets better, let me know.:hug2:
Thanks Rose warm water works for me too:thumbsup:

[Rose Cozzette]

Thanks Rose warm water works for me too:thumbsup:Dee, how are you doing? finally finished the antibiotic so starting to feel human again, weggie style of course. must have been the start of sinus infection since the meds helped. still at same level of preds, hope to decrease more soon.

[DEE]

Hi Rose still at 12mg until friday hands and joints slightly better although i got full bloods results today show infection madkers increasrd
so waiting for gp call am tommorrow
just abit worried about having infection at the moment as cataract op next friday
fingers crossed :ohmy:

[elephant]

Hang in there Dee, Your on eye drops right?

[DEE]

Hi Elephant Start eye drop tuesday morning , four times a day up to fri morning op

Bought a new Healthcare bed matteress arrived yesterday sleep like a log ! ok still woke up during the night but i was at least comfy :flapper:
So fed up at the moment even bought new slippers for when i go have eye op how sad is that :crying:

[elephant]

Dee, you will be so happy when this eye stuff is done. I know I am so glad this is behind me. Glad you got those slippers and a new matteress!

[DEE]

ok spoke to gp this morning started 11mg preds today this 2.5mg drop to much, if it does not work he said we could go back to the drawing board

[Sangye]

Dee, I found that I have to give a new dose at least a week before tapering when I get to lower doses. (At the very high doses you can jump from 40mg to 30 without a problem) Just a thought. I know you're sick of pred. :sad:

[DEE]

Thanks Sangye
i thought i would try and hold at 11mg for the next two weeks if things stay ok until ive had eye op and a week after
gp said i know how its working for me just to keep him informed on a weekly basis and im lucky that his surgery is about five mins away and the staff have been brillliant and i can book a telephone appointment any morning which means a doctor rings back by 11am the same day
hubby said he s impressed how i now ring when i need something and tell them when things arre not right even when they think are
wouu not have done this before i came on here :smile1:

[Rose Cozzette]

Hi Rose still at 12mg until friday hands and joints slightly better although i got full bloods results today show infection madkers increasrd
so waiting for gp call am tommorrow
just abit worried about having infection at the moment as cataract op next friday
fingers crossed :ohmy:darn, these darn infections that just crop up cause our immune systems are so suppressed. are you on antibiotics? it does nip it in the bud if taken right away. my fingers are crossed for you too! :thumbsup:

[DEE]

Thanks Rose
gp rang and said not to be worried about infection the consult is aware of my condition and they will keep a close excuse the pun eye on me !!
yes i take Septrin every other day and every day for a week after the op so hopefully things should be good :thumbup:

[Sangye]

Good idea to keep the pred dose stable until you heal up. I'm glad to see you taking control of your health. :thumbsup:

[drz]

Thanks Sangye
i thought i would try and hold at 11mg for the next two weeks if things stay ok until ive had eye op and a week after
gp said i know how its working for me just to keep him informed on a weekly basis and im lucky that his surgery is about five mins away and the staff have been brillliant and i can book a telephone appointment any morning which means a doctor rings back by 11am the same day
hubby said he s impressed how i now ring when i need something and tell them when things arre not right even when they think are
wouu not have done this before i came on here :smile1:

Congratulations on training them so well. It is great when you can get that kind of service.

[Rose Cozzette]

Thanks Rose
gp rang and said not to be worried about infection the consult is aware of my condition and they will keep a close excuse the pun eye on me !!
yes i take Septrin every other day and every day for a week after the op so hopefully things should be good :thumbup:good, onward and upward. got really cold here so affects my sinuses, as does everything it seems, so here we go. had to call my kidney doc and request latest labs, dont know why they just cant send them w/o me asking, frustrating. how are the eyes?

[DEE]

HI ROSE
my left eye is brilliant .just started drops ready for op on friday
lt made me laugh to myself after putting drops in my left eye for four weeks after last op i nearly put them in the wrong eye :confused1:
keep telling everyone i would be lethal if i had a brain cell that worked :ohmy:

[Rose Cozzette]

HI ROSE
my left eye is brilliant .just started drops ready for op on friday
lt made me laugh to myself after putting drops in my left eye for four weeks after last op i nearly put them in the wrong eye :confused1:
keep telling everyone i would be lethal if i had a brain cell that worked :ohmy:boy do I hear you! I had to put the schedule on the frig to check every day, and I did start on the right eye with one of the drops when I had already finished it. oy isnt it wonderful tho to see again? :biggrin1:

[DEE]

Its how bright the colours are that amaze me , do you have to wear gkasses at all Rose

[Rose Cozzette]

Its how bright the colours are that amaze me , do you have to wear gkasses at all Rose no, I'm not wearing glasses, the doc said i have 20/30 and 20/40 vision and that I could get glasses but I told him that I will just enjoy this for now as my eyesight had gotten so bad it was like a whole new world. I may eventually have to but not for now. I was amazed at the brightness of colors too!

[DEE]

Rang wg conxult this morning to tell him the problems tappering preds as im not due to see him while the end off March
He agrees about it been to fast for me !!
staying on 11mg up to 15 mg if things start to go down slippery slopes again ring him straight awat
he just was not happy with me been on 25-20mg mark !!

[elephant]

Glad you called Dee, how are the eyes and eye drops!

[DEE]

Yes I know im lucky to have him he always rings back within the hour if possible .and i only asked him to ring sometime this week as it was not urgent
had abit of temperature and headache last two days but not to bad today :thumbsup:
Eyes doing ok he put in long distance lenses so having to use magnifying glass to read just till i go back for check up on 25th feb then i can get reading glasses
hubby going for his tomorrow so i will be able to look foe new frame :biggrin1:
hands not so shaky this time so not drowning in eye drops :smile1:

[Rose Cozzette]

[QUOTE=DEE;34425]Yes I know im lucky to have him he always rings back within the hour if possible .and i only asked him to ring sometime this week as it was not urgent
had abit of temperature and headache last two days but not to bad today :thumbsup:
Eyes doing ok he put in long distance lenses so having to use magnifying glass to read just till i go back for check up on 25th feb then i can get reading glasses
hubby going for his tomorrow so i will be able to look foe new frame :biggrin1: Dee, boy this preds is the pits. I wish someone could explain exactly what is going on in the body as we decrease it as sure does cause a lot of stuff to happen. I use reading glasses also. I laughed abt the eye drops, I actually missed at times or put in more than i should have, tho didnt seem to hurt. My grandaughter told me one time "are you supposed to put in that many?" she is 6. hope everything clears up for you. hang in there... see the rheumy next week and see how to proceed in the preds decrease, even such a small amt less and I feel it. what was the highest amt you were on? did you become diabetic? I did.
:smile1:

[DEE]

I was on 80mg -60mg in the beginning then got stuck at 25-20 mg problems started again when i tried moving 10mg from 12mg
Its more the length of time ive been on high dose they worry about and becaue i have OA wether the symptoms are from that or wg
no. everybody asks about me been diabetic as its in my family but results come back ok

[Rose Cozzette]

I was on 80mg -60mg in the beginning then got stuck at 25-20 mg problems started again when i tried moving 10mg from 12mg
Its more the length of time ive been on high dose they worry about and becaue i have OA wether the symptoms are from that or wg
no. everybody asks about me been diabetic as its in my family but results come back okgood on not being diabetic, it also runs in my famly but i wasnt before preds. the doc said it may go away once I am off but who knows when. I was on 60 for 4 mos. and then began to taper, only had to go back up to 50 once. I also have OA which has gotten worse but just take calcium w/vit. D and clacitonin salmon nasal spray which is supposed to help me absorb calcium better. and yoga helps with stiffness.

[DEE]

Rose did you have OA brfore dxt od wg ? I was dxt with OA about four months before !

[drz]

What is OA?

[DEE]

OSTEOARTHRITIS mainly effecting knees and hands at first

[Rose Cozzette]

Rose did you have OA brfore dxt od wg ? I was dxt with OA about four months before ! yes, I had it for several years before, had surgery on rt. knee and left shoulder and had cortisone shots for left hip. I had to stop jogging due to back pain. funny enough I have less overall pain now, likely due to the preds, but more in hands and feet. strange...

[DEE]

Yes it started in my right knee and hip but its those and hands and ankles at the moment, it has not helped by trying to tapper preds

[elephant]

For years I was diagnosed with Juvenile Rheumatoid arthritis and all along it was Wegeners disease.

[Rose Cozzette]

For years I was diagnosed with Juvenile Rheumatoid arthritis and all along it was Wegeners disease. oh for petes sake! and the beat goes on...

[Rose Cozzette]

Yes it started in my right knee and hip but its those and hands and ankles at the moment, it has not helped by trying to tapper preds
I had to put my little dog to sleep, he went in to kdiney failure. I am sad, he was my buddy. when i first got sick he started getting sick and I think its funny that he got kidney problems when I also had them the vet said she has seen this happen a lot. :sad:

[elephant]

Sorry to hear that Rose, that is awful! I heard of that too, I know the dog smells cancer or whatever else that is going on in our body.

[DEE]

Hi Rose
Sorry to hear your news , Take care of you :hug3::hug2::hug1:DEEx

[Sangye]

Rose, I'm so sorry about your dog. :sad:

[Rose Cozzette]

Rose, I'm so sorry about your dog. :sad: thank you, appreciate it.

[Rose Cozzette]

Hi Rose
Sorry to hear your news , Take care of you :hug3::hug2::hug1:DEEx thank you, have had to put 3 dogs to sleep and it doesnt get any easier. sigh...

[Rose Cozzette]

Sorry to hear that Rose, that is awful! I heard of that too, I know the dog smells cancer or whatever else that is going on in our body. thank you for your sympathy. sigh...