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View Full Version : What can I expect now that I am reducing my meds???



csgaippe
05-19-2010, 02:41 AM
Good Afternoon!
I am new to this forum and just recently diagnosed. I have been struggling with upper respiratory symptoms for over 2 years and was finally diagnosed in March. I live very close to the Cleveland Clinic and by the time I got there the Wegener's had inflammed my kidneys. I was put on Prednisone, 60mg, and Methotrexate, .60 mls injected once a week. After 30 days, I started reducing the Prednisone by 5mg a day every week and am currently at 40 mg a day. I seem to be having many more side effects from my meds now that I am reducing them. The night sweats are worse as well as the insomnia. Not to mention the "roid rage"! Have others had this experience? I am also experiencing ear pain again and my nose is feeling blocked and dry again. At my last appointment, most of the crusting in my nose was gone, but it feels like it is back. Is this just the effects of the change is dosing or is my disease rearing it's ugly head again?
Cathie

elephant
05-19-2010, 06:56 AM
Hey, welcome Cathie...I go to the Cleveland Clinic too and see Dr Carol Langford. I have a feeling you are flaring with Wegeners. Tell your WG specialist tomorrow about your symptoms. Don't want it to get worse.
Yes the prednisone makes you crazy! I had to have family down here for months, I was pretty sick.

Sangye
05-19-2010, 07:52 AM
Hi Cathie, great to have you in the group. Well, I'm really glad you already go to CC so I don't have to nag you about getting a Wegs specialist. (I hope I remember. If I slip a nag in at some time, just remind me)

I agree with Elephant that it sounds like you're flaring. I'm also wondering why they didn't use cytoxan or rituximab instead of methotrexate, since you have kidney involvement. The side effects of pred that you're having are worse now because you've been on high-dose pred for over a month. The longer you're on it, the more it imbalances the body. Have you been reducing the dose by 5mg a day or by 5mg a week?

csgaippe
05-19-2010, 09:54 PM
It is so nice to know I am not alone! Before my diagnosis I asked my doc if maybe I was just having a nervous breakdown! :-)
I am reducing by 5mg per week. I will call my doc today and see what she suggests. I see Dr. Villa-Forte at the Clinic. My kidney involvement was mild; blood but no protein. I am due for more labs Friday in fact.
Thanks for the advice and I am sure I will have many more questions!
Cathie

csgaippe
05-20-2010, 01:52 AM
I got a doc appt for Friday morning! Yeah!

elephant
05-20-2010, 03:46 AM
Good, I am so excited for you...can't wait till Friday morning! Yahoo! To good health!!

csgaippe
05-22-2010, 08:30 AM
I saw my doc this morning and was reminded once again why I like her so much! It looks like I have picked up an infection from my grandson. I was trying to be careful, but he is 20 months old and grandmas can't resist! :-) Actually, he was fine the night I was with him but the following day at daycare he spiked a 103 degree fever. Anyway, the infection is in my ears and my sinuses, so I am on an antibiotic. My Wegs is kicked up a bit too, so the doc increased my Methotrexate and said I can continue to decrease the Prednisone. I realized just how much I have to learn about living with this disease. I didn't consider an infection as I take Bactrim 3 days a week and I didn't have a fever.
Thanks so much for all your advice!

Sangye
05-22-2010, 08:37 AM
I'm sure you'll hear this from everyone else-- keep an eye on that infection since Wegs likes to dress up in those clothes. If you're not a lot better in a couple days call your doc and let her know. I'm really glad you saw her today. Thanks for letting us know how it went! :)

elephant
05-22-2010, 09:03 AM
Cathie, hope you get better. I am in the same predictment. Still have sinus issues, but deep down I know my Wegeners is mildly active. So anything will make it angry, if I rest and not exercise it is happy. It likes Bactrim very much, like if I take Bactrim daily my sinus issues are better. This is not good for me to take since I have a kidney transplant and other side effects to add to that using Bactrim. I really need to discuss this with my WG in June. All my other organs are good, not showing any type of flaring.
Cathie, glad you like your Rheumy!

Sangye
05-22-2010, 12:02 PM
Elephant, I hope the Wegs falls back to sleep on its own. Take it easy and maybe that'll convince it to go back to sleep. :)

NicShaf
03-04-2011, 06:12 AM
Is it common for sinus issues to fluctuate slightly during treatment? I'm on 150mg Cytoxan daily, and just reduced my Preds to 40mg/ day as of Monday. My nose seems to be a little more runny than usual, and there is a little more blood in it in the morning than I have seen in a couple weeks. I'm not sure if it's reducing my Preds, or if I should be concerned about my treatment not working like it should. I've also been more tired than usual this week...another side effect of reducing the Preds? Anyone experience similar fluctuations?

pberggren1
03-04-2011, 11:32 AM
NicShaf, how long have you been on ctx? Things should be getting better and not worse at times. If it were me I would contact my doc.

Sangye
03-05-2011, 02:31 AM
I agree that a call to your doctor is in order. As you taper pred, it's normal to feel a bit more tired or a small increase in symptoms, but it should only be transient.

NicShaf
03-05-2011, 03:28 AM
I have been on Cytoxan since January 1st, my full 150mg dose since January 17th, so about 7 weeks. I have had blood in my nose every morning since diagnosis, but I have seen more in the past 5 days...with the sinus', it is sometimes hard to determine whether it's Wegs, or just the dry air...I guess it's better to be safe rather than sorry and contact my doctor.

Thanks for your input Sangye and pberggren, it is greatly appreciated.

Kathie28
03-05-2011, 03:07 PM
My doctor reduced me from 60 to 40mg of pred just this past Tuesday. I was so happy for the drop but now my sinus drainage has picked back up and tonight I suddenly have a sunburn type rash on my inner thighs again. The last time I had the rash was about a month after starting pred and 2 weeks after my first rtx infusion. Now it's been just over2 weeks since 2nd infusion and it is back. It burns like crazy in the shower. I wish I knew what was going on. Is it the reduction in pred wegs or the rtx?

I have been doing so much better. Creatnine is down from 2.4 to1.5, cough was greatly reduced and sinus drainage and blood was down. I'm just a little worried what this hiccup means.

Sangye
03-06-2011, 01:13 AM
I haven't heard of such a thing with a pred reduction. It doesn't sound like a vasculitic rash. You should definitely call your doc since it sounds like a reaction to rtx. S/he might suggest taking OTC benadryl. If it helps the rash, then you know it was an allergic reaction. It wouldn't have any effect on a vasculitic rash.

drz
03-06-2011, 05:10 AM
I have been on Cytoxan since January 1st, my full 150mg dose since January 17th, so about 7 weeks. I have had blood in my nose every morning since diagnosis, but I have seen more in the past 5 days...with the sinus', it is sometimes hard to determine whether it's Wegs, or just the dry air...I guess it's better to be safe rather than sorry and contact my doctor.

Thanks for your input Sangye and pberggren, it is greatly appreciated.

What does the ENT doctor say?

NicShaf
03-06-2011, 02:40 PM
I don't really deal with my ENT, although I saw my ENT and Rheumy together about 2 weeks ago, and there was basically no more inflammation in my nasal passage, minimal at most. I don't feel any inflammation, and I'm still able to breath through my nose fine, it just more blood and slightly more drainage. I emailed my Rheumy's office, but unfortunately he's on vacation, so I'm waiting for his office to get back to me after checking with the doctor covering his cases in the meantime. He is back next week, they are probably stalling until then.
My ENT doesn't feel that I should be on any treatment for WG without a 100% diagnosis, she basically doesn't agree with my Rheumy and Pulmonary doc that I have it, so I don't really contact her for anything.

elephant
03-06-2011, 03:16 PM
I am in remission and I still get a runny nose daily and sometimes bloody nose. My concern is that when you add being more tired to the mix, that is a concern and I would call the doctor.

drz
03-07-2011, 06:07 AM
I am in remission and I still get a runny nose daily and sometimes bloody nose. My concern is that when you add being more tired to the mix, that is a concern and I would call the doctor.
How people people who have had a serious case of Wegener's disease will ever not be tired again? Kidney damage, lung damage, neuropathy, muscle loss, etc seem likely to me to result in feeling tired even when the drugs have control the Wegener's disease so it is no longer very active. Many of us here seem to get exhausted from climbing a couple flights of stairs or other activity so often feeling tired seems natural. I know though when my Wegener's was more active and I was bleeding in the lungs and my hemoglobin would get real low, I could barely move enough to get out of bed.

I guess the question is what or how many residual symptoms are typical or normal for us even when lab results and doctors say we are in remission? Some nasal bleeding, mild joint pain, etc??? We may be 90% better but some of these symptoms might still remain, right or wrong?

pberggren1
03-07-2011, 07:29 AM
Wegs can really decondition a person and even if you get into remission it can still be very hard to get back into any sort of physical activity.

There are symptoms from active Wegs and then there are symptoms from the damage of Wegs. Sometimes it is hard to tell the difference between the 2.

Most people will never be the same again after Wegs and will most likely not have the same energy and stamina as before Wegs came along.

elephant
03-07-2011, 08:20 AM
I think it depends on the persons age and damage that occurred. Being more tired than usual is a red flag, and if you have other symptoms that have crept up it is worth getting it investigated.

NicShaf
03-07-2011, 10:02 AM
I attributed my slight increase in fatigue to my decrease in Preds, I seemed off for about a week last month when my daily dose dropped. But it is interesting to hear that others have runny nose with a little blood even while in remission.

Sangye
03-07-2011, 02:36 PM
I guess the question is what or how many residual symptoms are typical or normal for us even when lab results and doctors say we are in remission? Some nasal bleeding, mild joint pain, etc??? We may be 90% better but some of these symptoms might still remain, right or wrong?
Right. When I was on Cellcept I continued having terrible joint pain. Dr Seo thought it was just deconditioning but it turned out to be "grumbling" Wegs. It can be very difficult distinguishing between Wegs damage and active Wegs--even for the Wegs specialists.

drz
03-08-2011, 09:16 AM
Right. When I was on Cellcept I continued having terrible joint pain. Dr Seo thought it was just deconditioning but it turned out to be "grumbling" Wegs. It can be very difficult distinguishing between Wegs damage and active Wegs--even for the Wegs specialists.

And for us patients too!:sneaky: things!