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Alysia
12-03-2018, 11:34 PM
Hi,

So, years of pred's consuming have their costs. I hit the wall and fractured my toe, Thanks God for the small price - the little finger.

I spent hours yesterday at the outpatient clinic (like ER but not in a hospital). The weired thing was that after the impact of the paracetamol that I took for the pains was gone, I started to shiver with cold, so bad that my teeth were chattering loudly for a long hour. I felt like I am freezing but I didnt have fever. I had nausea and felt like almost fainting.

They gave me more pain meds, bandage to my feet and blankets until I felt better. Blood tests were ok so no infection. They couldnt explain what it was.

It happened to me again in the middle of the night although less severe. I still feel some chills and like freezing without having fever, and nausea which comes and goes. Also feeling exhausted.

I wonder if it might be related to being on the pred ? I remember but not sure something that someone wrote here years ago about us being on the pred and if we get some injuries ?? But I cant remember what it was... I think it was something that Sangy wrote ? anyone recall ?

Also, they said that I dont need a Tetanus vaccin but I remained with the question if we are alowed to get it, and more so, after doing some online reading, maybe we must get it ?

Thank you for being here, I love you all.

Pete
12-04-2018, 01:23 AM
Ouch!! Sorry about your toe, but it will heal in a few weeks. The chills seem like a side-effect of something. If not the pain med, then, perhaps, of the injury itself. Hope you’re back to normal soon!!

annekat
12-04-2018, 02:57 AM
Oh, I'm sorry about your toe, Alysia! It must be painful, and the chills and shivering are hard to explain. Some kind of shock to your system, maybe? I don't remember the post you refer to, but I hope someone does. The last I knew, Sangye was active on Twitter, and I rarely go there, but I did PM her there a few times and she answered my questions. I also suspect she is still a member here and would respond to a PM, or maybe she will even see this. I hope your toe heals fast!

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Arleta
12-04-2018, 03:38 AM
I once had an allergic reaction to contrast dye that presented like your symptoms. They had to flush it out of my system. Perhaps you are allergic to the pain med they gave you.

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Masha
12-04-2018, 12:44 PM
Alysia, Ouch, a sore toe!
I can answer the Tetanus vaccine question. I got one this past summer. It is not a live vaccine, so it is OK for us. I had no after effects from it. Two things to keep in mind, the questionnaire at the pharmacy asks if you are on prednisone and how much. At the time I was on 10 mg, and that was fine. The other thing to remember about vaccines, if you are currently being treated with Rituxan, you do not get the full effect of the vaccine. I felt that some protection was better than nothing. I would just suggest that whoever is administering the shot (in my case pharmacist) be fully informed of all your medication. I know you are on top of all this stuff, just doesn’t hurt to be reminded.
The chills and nausea- I have experienced this with pain medication, antibiotics and prednisone. So pick your poison, could have been any of those that caused it.
Please keep us posted. In the meantime you know I am praying for you.
Masha

richard052018
12-04-2018, 04:50 PM
Sorry about the toe. I broke mine stepping out of the shower years ago before diagnosis (banged it on the bathtub). Not fun.

As for the nausea/chills, I would bet they are a medication reaction. When I first went on Bactrim, I developed a cold sensitivity with my teeth. I'd order my drinks "no ice" when eating out it was so bad. Thankfully, it has subsided, but it was a rough first couple of weeks.


Since you are so on top of things, I'm assuming you get a bone density scan. I've been told to get one annually. I know they typically don't scan the toes, but how were your numbers last scan?


Know everyone around here is pulling for you. Take Care

12-05-2018, 03:35 AM
Injured toes can be inordinately painful. It sounds as if your symptoms may have been related to a generalized stress reaction to pain, injury. Paracetamol is another fancy word for Acetaminophen or Tylenol, unlikely to cause a reaction. Being on Prednisone however can cause us to be less able to deal with any stress.
Trust you’re doing better now. Let us know!

Bing505z
12-05-2018, 04:20 AM
Hi,

So, years of pred's consuming have their costs. I hit the wall and fractured my toe, Thanks God for the small price - the little finger.

I spent hours yesterday at the outpatient clinic (like ER but not in a hospital). The weired thing was that after the impact of the paracetamol that I took for the pains was gone, I started to shiver with cold, so bad that my teeth were chattering loudly for a long hour. I felt like I am freezing but I didnt have fever. I had nausea and felt like almost fainting.

They gave me more pain meds, bandage to my feet and blankets until I felt better. Blood tests were ok so no infection. They couldnt explain what it was.

It happened to me again in the middle of the night although less severe. I still feel some chills and like freezing without having fever, and nausea which comes and goes. Also feeling exhausted.

I wonder if it might be related to being on the pred ? I remember but not sure something that someone wrote here years ago about us being on the pred and if we get some injuries ?? But I cant remember what it was... I think it was something that Sangy wrote ? anyone recall ?

Also, they said that I dont need a Tetanus vaccin but I remained with the question if we are alowed to get it, and more so, after doing some online reading, maybe we must get it ?

Thank you for being here, I love you all.


Ouchie! I hope you’re feeling better Alysia….slow down and be careful over there and take care of that little toe!

annekat
12-05-2018, 04:43 AM
We need to be careful about a lot of things with long term pred use and lowered bone density. I once cracked a rib on my left side while cleaning my deep bathtub. People said it was probably just a bruised rib, but I swear I heard it crack . Then my brother in law said the same thing happened to him, and he's not even a Weggie, nor do I know of any pred use by him or anything about his bone density. Then other times I have done things like splitting wood and gotten a sharp pain which I figured was a bruised rib. Later an x-ray revealed a healed cracked rib on my right side, but no mention of the previous one when cleaning the bathtub. Whether cracked or bruised, these usually heal by themselves within a couple of weeks without medical intervention, but they are painful and do affect ones daily life. It would be smart to see a doc, but I didn't. I still split wood with a small hatchet, but try to avoid anything needing a splitting maul. Right now I have no rib pain.


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Alysia
12-05-2018, 06:32 AM
Injured toes can be inordinately painful. It sounds as if your symptoms may have been related to a generalized stress reaction to pain, injury. Paracetamol is another fancy word for Acetaminophen or Tylenol, unlikely to cause a reaction. Being on Prednisone however can cause us to be less able to deal with any stress.
Trust you’re doing better now. Let us know!

Thank you so much, all of you, my dear friends, for your wise and kind comments and for being here with me.

My bone density shows ostheopenia. Lately I started again to walk daily in order to help my poor bones but now it will have to wait...

I think that kwnorton is right. Paracetamol doesnt make me any reactions. I stopped taking it but still have chills and nausea, although much less, coming and going. The pain is also less.

I think it is like kwnorton said, a stress reaction of a body which is on the pred. I found the thread I was looking for:

Not sure but maybe I was supposed to take more pred to help myself... Sangye described a more dramatic event. Anyway, a good reminder.

https://www.wegeners-granulomatosis.com/forum/threads/3192-(Finally)-Some-Great-News/page2?highlight=Sangye+stress

On page 2 Sangye wrote: (I copy)

This applies to anyone on pred and every doctor normally thoroughly informs a patient when s/he is put on pred doses 20 mg or higher for at least 3 weeks. (That's the dose and length of time necessary to shut down the adrenals) But PLEASE VERIFY this with your own doctor, as I cannot give medical advice.

If you have an accident, trauma, surgery, severe stressevent, etc. it can put you into an adrenal crisis, which means your usual pred dose is not enough to keep you alive. This is fatal within 24 hours if not addressed. Normally you need to take double your daily pred dose as soon as possible, but if you're already at higher doses (eg 60 mg or higher) you might need less. If you are unsure, you MUST call your doctor immediately (page them) OR go to the ER immediately.

This is also true for one year after you go off pred. You should always carry enough pred with you and your emergency card in your wallet and/or Medical alert necklace should indicate this.

annekat
12-05-2018, 07:27 AM
None of my doctors have informed me of any of that. I've been coasting at 7.5mg for quite awhile now and would like to go down to 5. I had a referral to an endoctrinologist to address my low bone density and I never followed through. Perhaps I should.

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mishb
12-05-2018, 10:01 PM
Ouch, I know how that feels.

I had a very graceful slip and fall (it was slow motion) in the shower a couple of months ago, and broke my toe (the one next to the little one) and I found out two weeks ago, that I also tore the flexor tendon under my foot. My doctor said that it was plantar fasciitis, but it turned out to be a tendon tear (thanks Mr Pred,you love to help, but you also love to hinder)

I will never forget the post that Sangye put up about the extra pred when involved in a trauma or traumatic situation, and have used it a few times, and certainly did on the day of the shower fall.

I hope your toe heals quickly, and your body systems get back to normal.

Alysia
12-06-2018, 05:35 AM
Ouch, I know how that feels.

I had a very graceful slip and fall (it was slow motion) in the shower a couple of months ago, and broke my toe (the one next to the little one) and I found out two weeks ago, that I also tore the flexor tendon under my foot. My doctor said that it was plantar fasciitis, but it turned out to be a tendon tear (thanks Mr Pred,you love to help, but you also love to hinder)

I will never forget the post that Sangye put up about the extra pred when involved in a trauma or traumatic situation, and have used it a few times, and certainly did on the day of the shower fall.

I hope your toe heals quickly, and your body systems get back to normal.

Dear Michelle,

I am so sorry about your toe and tendon, sounds too sore :crying: praying it will heal soon.

Do you relate to the post of Sangye that I quoted above or to another one ? How much extra pred did you take and for how long ?

Now that you say it this way, I think that @Dirty Don (https://www.wegeners-granulomatosis.com/forum/member.php?u=4122) or was it @Pete (https://www.wegeners-granulomatosis.com/forum/member.php?u=5529) or both of them - also wrote something about taking extra pred in case of injury ?? Not sure.

@annekat (https://www.wegeners-granulomatosis.com/forum/member.php?u=2431), for me as well, no dr. ever told me about Sangye's advices.

I read more of Sangye's posts about the pred and they contain VERY important info. Worth going back and reading.

Pete
12-06-2018, 09:23 AM
Alysia

It wasn’t me...

Is the toe feeling better?

mishb
12-06-2018, 05:49 PM
Lovely Alysia,

My toe is fine now, except that it still looks a little bruised. The fall was at the end of August, so it has had plenty of time to heal.

I hope your toe is feeling better each day.


In regards to Sangye's post, yes it is the one that you have put up. The one that says to double your dose in the event of a stressful incident or trauma or accident.

I am only on 1mg pred, so when I fell, I took 10mg and each day I reduced it by 1mg until I was back at my normal dose of 1mg. So just over a week.

whatthewhat
12-06-2018, 08:11 PM
Nothing to add medically; just super sorry you are going thru this :(

12-07-2018, 02:26 AM
Thank you so much, all of you, my dear friends, for your wise and kind comments and for being here with me.

My bone density shows ostheopenia. Lately I started again to walk daily in order to help my poor bones but now it will have to wait...

I think that kwnorton is right. Paracetamol doesnt make me any reactions. I stopped taking it but still have chills and nausea, although much less, coming and going. The pain is also less.

I think it is like kwnorton said, a stress reaction of a body which is on the pred. I found the thread I was looking for:

Not sure but maybe I was supposed to take more pred to help myself... Sangye described a more dramatic event. Anyway, a good reminder.

https://www.wegeners-granulomatosis.com/forum/threads/3192-(Finally)-Some-Great-News/page2?highlight=Sangye+stress

On page 2 Sangye wrote: (I copy)

This applies to anyone on pred and every doctor normally thoroughly informs a patient when s/he is put on pred doses 20 mg or higher for at least 3 weeks. (That's the dose and length of time necessary to shut down the adrenals) But PLEASE VERIFY this with your own doctor, as I cannot give medical advice.

If you have an accident, trauma, surgery, severe stressevent, etc. it can put you into an adrenal crisis, which means your usual pred dose is not enough to keep you alive. This is fatal within 24 hours if not addressed. Normally you need to take double your daily pred dose as soon as possible, but if you're already at higher doses (eg 60 mg or higher) you might need less. If you are unsure, you MUST call your doctor immediately (page them) OR go to the ER immediately.

This is also true for one year after you go off pred. You should always carry enough pred with you and your emergency card in your wallet and/or Medical alert necklace should indicate this.





Although both my son and myself have developed chronic Adrenal Insufficiency (unknown if we have had Adrenal “Crisis”) we are managed by daily Hydrocortisone (NOT Prednisone). We no loger take Prednisone for our Vasculitis.
Yesterday I was rediagnosed by my Los Angeles Rheumatologist with CNS Vasculitis and have been directed to begin Rituxan treatment for the 7th time as soon as we can get it set up.
My son will get Rituxan again too, as soon as they rule out GI infection.

gilders
12-07-2018, 09:52 PM
Hi Alysia,
Sorry to hear about your toe injury.
I initially thought the "chills" could be a symptom of shock, but if it's still happening days after the injury, I'm not so sure. Hope you're painfree soon.

gilders
12-07-2018, 09:54 PM
Hi Michelle,
Also sorry to hear of your foot injury too. Hope you also are recovering well and putting your feet up.

mishb
12-07-2018, 11:06 PM
Hi Michelle,
Also sorry to hear of your foot injury too. Hope you also are recovering well and putting your feet up.

Thanks mate, all good here.
I wear a support sock that helps with the flexor tendon

I hope you are finally getting some relief.
Any new kidney in sight yet?

Alysia
12-08-2018, 05:19 AM
Hi Alysia,
Sorry to hear about your toe injury.
I initially thought the "chills" could be a symptom of shock, but if it's still happening days after the injury, I'm not so sure. Hope you're painfree soon.

Thanks a lot Pete. My Toe and me are feeling better each day. No more chills. I think you are right and it was a symptom of shock. If something similar will happen again I will take more pred.

Nice seeing you around. I missed you. I keep you always in my thoughts and prayers.

Any kidneys' news ?

Alysia
12-08-2018, 05:53 AM
@Alysia (https://www.wegeners-granulomatosis.com/forum/member.php?u=7230)

It wasn’t me...

Is the toe feeling better?

I found it here

https://www.wegeners-granulomatosis.com/forum/threads/5835-Pred-Taper-Completed/page2?highlight=Pred+blast

You and Dirty Don call it pred blast.

Dirty Don
12-08-2018, 06:43 AM
Just finished a 'pred blast' for severe case of bursitis (I crashed into a golf cart this summer with my BODY! - how dumb was that...this old bod doesn't take hits like that anymore!) at 60mg for 5 days, then a taper. Worked quite well...yes, I was a pain to live with for a week or so, but I feel better now. Looking for other alternatives is hardly efficient nor validated for the most part, nor are they for everyone. Keep looking everyone...this is what we've got! Handle it. Best to all!

gilders
12-08-2018, 10:00 AM
Any kidneys' news ?

I've lost count of the amount of times I've been told "one final test", but on Tuesday I will have an exercise cardio test and alpha-fetoprotein test. That should be everything completed and operation should be about 6 weeks later......but we'll wait and see. The hospital that has been arranging this transplant has done a very poor job in my opinion. Every few months I think about requesting to change hospital, but as I keep being led to believe I'm very close to the operation, I decide not to "rock the boat".

Alysia
12-09-2018, 05:32 AM
I've lost count of the amount of times I've been told "one final test", but on Tuesday I will have an exercise cardio test and alpha-fetoprotein test. That should be everything completed and operation should be about 6 weeks later......but we'll wait and see. The hospital that has been arranging this transplant has done a very poor job in my opinion. Every few months I think about requesting to change hospital, but as I keep being led to believe I'm very close to the operation, I decide not to "rock the boat".

Thanks for the update Pete. I admire your patience and endurance. Praying you will soon get your new kidney.

Alysia
12-09-2018, 05:40 AM
Just finished a 'pred blast' for severe case of bursitis (I crashed into a golf cart this summer with my BODY! - how dumb was that...this old bod doesn't take hits like that anymore!) at 60mg for 5 days, then a taper. Worked quite well...yes, I was a pain to live with for a week or so, but I feel better now. Looking for other alternatives is hardly efficient nor validated for the most part, nor are they for everyone. Keep looking everyone...this is what we've got! Handle it. Best to all!

Thanks for the update, Don. Sorry about your accident and glad that you are getting better. Be careful and take good care of yourself, old bod or not, I guess we weggies got our bodies "second hand" from the beginning :wink1:

Then, pred blast is the way to go with injuries. At least we are blessed to have it, compared to poor non weggies who don't know the joy of pred consuming :flapper:

Masha
12-09-2018, 09:01 AM
Hey Dirty Don, Golf cart crashes are no fun. But at least you are on the uptick. I was doing a slow taper from prednisone. From 10, I went down 1/4 every two weeks. It took me two months to get to 9. Feeling great, but then I had to go and push a faster taper. Talk about DUMB. I woke up with the start of a sore throat, didn’t even have to cough to get all that phlegm up. So up went the prednisone, on went the humidifiers, Mucinex for chest. All I needed was another case of pneumonia. I caught it in time. Thanks to all of you out there who keep repeating to move fast. I am just left with some leg pain. The hardest part was my husband was having a procedure in downtown Charlotte. I wanted to be with him, and I did manage to drive. Since I was going to be in a medical building I thought it would be prudent to wear my mask and gloves. All I needed was a white coat! When we left I still had the mask on and stopped at a store. Three people thanked me for wearing it. I didn’t want to tell them I was wearing it to protect myself from them.
Snow coming to Charlotte this weekend. BRRRR
Masha

NatriceRomeo
12-09-2018, 09:30 AM
Hi Alyssa,
I know when I break a bone (I u fortunately have broken several in my life) I get nauseous & have the chills. It’s my body’s reaction I guess. Doesn’t matter if I have broken a thumb or an arm-my body reacts the same & I know immediately it’s broken. As for the tetanus vaccine-since my diagnosis I have had several without any reaction.
Natty


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greenjeep
12-19-2018, 09:42 AM
fructure... is that a mix between 2 different words or simply a typo?
just kidding, just a little humor on an otherwise gloomy day.

I'll be your huckleberry.

12-19-2018, 09:53 AM
Assuming it is a misspelling of Fracture. But then again perhaps it was someone’s joke i didn’t get. Wouldn’t be surprised in my current state. Still waiting for Rituxan & finding humor difficult to find.
❤️������

Alysia
12-23-2018, 01:41 AM
fructure... is that a mix between 2 different words or simply a typo?
just kidding, just a little humor on an otherwise gloomy day.

I'll be your huckleberry.

It is both a typo and a spelling mistake :lol:

I just needed to google translate "fructured" - I didn't know that word... funny to have a fructured toe...

Alysia
12-23-2018, 01:42 AM
Assuming it is a misspelling of Fracture. But then again perhaps it was someone’s joke i didn’t get. Wouldn’t be surprised in my current state. Still waiting for Rituxan & finding humor difficult to find.
❤️������

Sorry you are still waiting for rtx. Why does it took them so long ?