I'm feeling really rough over the last few days after reducing 10 days ago. I felt ok for a few days but have felt worse over the last 4days.
Feeling spaced out and exhausted, I'm pale and have a slight headache. Pain has come back in my temple and my scalp is sore, my eyes are puffy and sore too.
I've had pain in my lower back and shoulders but not severe.i am also having a lot of sweating again.
After resting the last two days, I had to go to the hospital for physio on my ankle which I have a small break in. I did this four weeks ago and am now walking with a stick.
I wondered if anyone knows if this is coming from the pred or the condition as I am quite confused.
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Chynnamoss
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Chynnamoss, that was a very fast reduction, so perhaps it's been a reduction too far? The fact that you are now symptomatic some little time following a reduction generally means that the inflammation is not now under control i.e. the dose isn't now managing the inflammation you have. You've also got the added stress of the ankle problem and treatment and PMR/GCA does love stress, it comes right out to say hello.
Perhaps you could go back to the last dose you were comfortable on and see if that helps although it might take a few days to settle. We usually say that but an additional 5mg is sometimes necessary to regain control of the inflammation.
Thank you so much for replying so quickly. My rheumatologist is keen to get me down to a reasonable dose as I was reacting badly to the pred but I I'm not happy to do it at the expense of feeling this way .
I'll go back to the previous dose tomorrow and see how I feel in a few days as you suggest.
This condition truly does have a mind of its own, it requires lots of patience and a sense of humour don't you think? Sometimes it's difficult to think this way though!
It is all very well wanting to get you off pred because you don't react well on it but since you obviously were diagnosed with GCA the alternative is worse. The most recent research has shown the inflammation is still present after 6 months when the dose at 6 months is 20mg and the other indicators are "normal" - so the level you are on after 5 months is a bit risky. It is likely that the higher doses should be given for longer not less. As polkadotcom has said - any stress just adds to the mix and reducing then is very unlikely to succeed.
Agreed, here. GCA is very dangerous. The nerves to the eyes are supplied by the temple arteries, if they are inflammed, eyesight can be lost, hopefully temporarily, sometimes permanently. The disease then becomes very dangerous. This was impressed to me, during my second flare in the hospital. I had two young opthamologist interns who worked with me during the four days I was there. I said, "I can't take this prendisone any more" -- they got me through four days of 120mgs every six hours. Using benadryl, nexium and I think oxycotin. "We" got through it. My eye discs were no longer swollen, I could see pretty well. Still have some vision loss in my left eye. I went to their clinic, every week, as an "acute" patient, until I could find a rheumatologist. We got through it with a bit of arguing and my "oh my god, I can handle this." After, we did laugh a bit, etc., They were good medical people. I have my eyesight, now. Until something else is found, prednisone stops the inflammation that can cause dangerous, very dangerous, -- -- maladies. We need to work with it, the prednisone, for the time being. Agreed on this post. best, Whittlesey
Hi Chynnamoss, If you have GCA and were given the high doses of prednisone to deal with temple inflammation and possibly blindness, the high doses of prednisone can cause problems. I have GCA and went from very high dosages to lower dosages and was very sick. I didn't find this helpful sight until after my third "flare" hospitalization and the high dosages and then reducing. I felt as you have described. I live in NYC and even with some disability do a lot of walking. I remember a summer day in 2012 after the diagnosis, and I had several places I intended to go. I was walking (with a doctor prescribed walker due to dizziness and very bad hip pain) and I could see the office building I intended to go to. I remember resting on the walker, looking at the building, the distance, and realizing that I could not walk there. My muscles seemed extremely weak (which was unusual) and I realized I couldn't do it. I did some of what I intended to do, only closer and had to rest quite a bit.
In speaking to a doctor, he said I had Cushingnoid symptoms due to medication, prednisone. He to start reducing. He gave me no regimen or plan to do this. Just to keep in contact with him and tell him which dose worked.
I did web research, and found this good, helpful and supportive site, also Christine Northrup, MD in the midwest. She has good information on adrenal insufficiency, which many of us may be suffering from. I realized I may be suffering from that. That large doses of prednisone, it seems, give our adrenals the signal not to produce cortisol. Cortisol is need for body funcitons. It comes synthetically, artificially from the prednisone. If you stop the pred or reduce quite a bit, the adrenals do not just pick up and start producing. Your body has very little cortisol to work with and we are pale, tired, faint, dizzy. It seems like the muscles/body won't "work".
I had never had this. Or earlier, if I felt this wasy, I would get out and walk, etc. That can be counterproductive with this. Pats, here, on this site, has some very good advice. I would search her posts. She wrote one, which I copied into my email. it isvery good. She said something to the effect, -- -- do what you need to do,but when you feel the fatigue coming on, have something light and a drink and then rest. She said those around you might not understand and yu have the bright pink cheeks (from the prednisone) which I have and many have, but let them know you are suffering from a serious disease need you need to take care of yourself. -- I am paraphrasing. But I knew she had exactly what I had and was dealing with some of the same "adaptive" problems I was. I copied it and I go by it.
We have to survive this. These are rare diseases, with some research, not a lot. Some good people on this site, and we are all searching our way through this, reaching out to each other and getting answers. Sometimes we have to "diplomatically" educate our doctors, but many of us in the working world have had to "educate men" of our capabilities. Using these same skills, with maybe more diplomacy, because our health hangs in the balance, -- we have to let them know -- "no, I can not take 120mgs of medrol right now, my body can't handle it. What alternatives can we come up with". Many of us have had good results with doing this. And we have had the really bad incidents. I would say , get the most knowledge you can, see what works for you and try to engage your doctor or physicians' assistants as a "co-worker" in this. --- -- so we can survive and come back to some point of health. And as Pats, here on this site and Christine Northrup, MD, midwestern U.S. counsel, "give yourself a well deserved break" and get healthy.
I wish you all the best. would don't stress on the symptoms and find out what they are. There is a honey that helps, herbal teas, anti inflammatory diet and lower the prednisone, slowly. This site presents a few ways to do that. best of luck. remember you are putting this disease in remission. best, Whittlesey, NYC U.S.
Hi Chynnamoss, I think I was dealing with a similar situation after a "flare" and hospitalization. Rheumatologist suggested intermuscular injections of 10 mgs of methetextrate, weekly, keeping the 4mgs of medrol. I tried it. The first day after the weekly injection, I felt pretty week, dizzy, very fatigued. But the second day better, third day better, etc. And I could see the inflammation around my eyes, reduce, ankles, also. I was on this for about three months. I reduced it down, tapered it slowly, and then stopped,because I really want to be off of these strong medications. I am still on the 4mgs medrol.
The methetextrate did seem to really help with what you are describing. The first day after, the injection, was really hard, but then it seemed to be reducing the inflammation and I didn't have to take more medrol, which I don't want to do.
After a few months the methatextrate has side effects, including very dry skin, to the point of peeling and sometimes a feeling of tremendous fatigue (which I experienced). Also hair loss, -- they gave me folic acid to counteract that and I believe it did. It's actually used as an anti-cancer drug, but now also for people with PMR and GCA as a steroid reducing agent. It does work seem to work,in that way, for some. Research says it works for some, not all. Worth a try, I believe.
It may be a solution for what you are experiencing. It seems to end a combination of "flare" and reaction to prednisone. may be a possibility. again discuss with doctors and physicians' assistants, to come up with a "plan" that works for you. Hope you feel better. What you are going through is very difficult. There does seem to be "another side" close to, or actually being free of this. all my best to you, Whittlesey
I've gone back to my previous dose of 15mg and see how it goes. I must say I've found these forums far more useful than the GP who just seems to leave it to me.
I'll go slowly and wait untill I'm sure it's time to reduce again. How much do you think I should come down next time? I would welcome the advice.im certainly not in any hurry!
You're welcome, Chynnamoss. I agree, the forums are helpful and many have a real sense of this and offer good advice. Doctors sometimes may not to be familiar with these diseases or just give short "stock" answers, which doesn't help with these diseases and the prednisone. Wish you well and health as you move forwards. This post has suggestions on reducing. It is pretty specific, I have read it, but don't have it in front of me, right at the moment. Possibly, in the search function -- "reducing prednisone". It does seem very good, and a better way, than just dropping the dosage. wishing you health, Whittlesey
If you are fine at 15mg stick there for at least a month and let your body settle down. Then, if you decide to reduce, do it 1mg at a time - and being modest (NOT!) I'll refer you to the reduction scheme I've been posting where you take 4 or 5 weeks to get from (say) every day 15mg to every day 14mg. If you haven't seen it - ask and I'll post it for you.
It's nice to meet you and thank you for your contribution. The help and support is most welcome as you must know yourself.
I've already started taking honey and yoghurt and bought a book too find out the dietary changes which may help. It's taken months to accept what this condition does to you and now want to do anything possible to make it bearable . Slowly though as it's clear it can't be rushed .
You have clearly gone through an an awful lot, how long has it been since you were diagnosed? It makes me believe things will get better given time.
I too think my problems are a combination of coming down too quickly and reaction to the pred I only hope I can get my GP to listen and co operate with me to find a solution . We will see!
I wish you all the best and I will let you know how things go if that's ok. Chynnamoss
Hi Chynnamoss, Nice to meet you. am in agreement. It seems that GCA and PMR are "rare" diseases, and many doctors are not overly familiar with them. That seems to make diagnosing them, not as obvious, as it should be.
Glad you're dealing with it. It seems you are researching and participating in your treatment, which many think is one of the best ways, esp. with illnesses that are "rare". Sounds like you're doing well with that.
I and many know how hard it is to use prednisone as treatment. I had a really hard time with it, and sometimes if they increase it, still do. Was so surprised to find out there are few alternatives. It really does get the inflammation down and fast. In GCA that is so important. In early talks after the diagnosis with my doctors, I realized the seriousness of GCA. My ear, nose and throat doctors, put his notes down and said, "Look, if you start to go blind, this illness has a morbidity of 4 years, did you know that?" Well, I didn't. I took his advice and also found some good, knowledgeable doctors. I have changed quite often, because my thought is, I don't have the time for them to "come up to speed".
Personally, I am in agreement with you, the anti inflammatory diet may be the best. My sense is, we need to get our lifestyles in order, to not have "inflammation". Penny has some very good recipes that she created on the anti inflammatory diet. If you look at her posts, you will see them. The Shepard's Pie with sweet potatoes, is very good.
Many good wishes sent as you move towards a better point, in this disease. Would say don't hesitate to call your doctor or go to the ER. I did that, 4 times and it was very -- "life saving" I believe. Cat scans showed dissecting arteries which often go with GCA and I am being treated for that and it explained some very serious symptoms.
Personally, I also like the herbals, I think overall, long term they can support the medication we are now taking.
again wishing so much good luck and health. Most of us will answer your questions, if it is in our -- -- 'knowledge' or experience. all, I believe, hope your disease goes into a form of "remission" and as you slowly reduce the pred, you will be ok.
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