Help for extreme pain in thighs and arms

[GratefulBailey]

I took my last prednisone tablet mid May (GCA diagnosed late April 2019); cortisol test in June was 203 (reference range in Canada is 135-537); 380 in September so my adrenal glands are well on their way to recovery. I have been on Actemra injections since October 2019, now every three weeks (until January 2023) because of low WBC and neutrophils which are now back in the normal range. All bloodwork (end of October) is good, including thyroid which I know can cause muscle pain. I have had a terrible time taking prednisone - high blood pressure, arrhythmia, severe acid reflux despite taking prednisone with a meal and with Tecta, loss of balance, muscle pain, tingly legs, numb feet, sleep disturbances, became pre-diabetic to name a few - which I know other members have also experienced. When I reached 3 mg, most of the prednisone side effects were gone with the exception of severe acid reflux, sleep disturbances and severe muscle pain. I had an EMG 2 years ago and there were no irregularities.

I have used magnesium spray on my sore muscles, have Epsom Salts baths, and use muscle rub creams (Arnica, Biofreeze). The pains increased after my Moderna vaccine; I was hoping it was a side effect from the vaccine, but 3 weeks later the pains are still extreme, especially at night. My best friends are 3 heating pads to provide comfort! All of these plus Tylenol or muscle relaxants (OTC) take the edge off the pain, but just barely.

I contacted my rheumatologist this morning and he suggested I try .5 mg pred to see if that helps, increasing by .5 mg until the pain goes away. He has ordered another EMG but the wait times are horrific here (Canada) - as they are world wide. I am very reluctant to try any prednisone because of the stomach issues - even at .5mg in the spring at the end of my taper, the stomach pains/reflux were awful. My gastro prescribed 1/4 tablet of Mirtazapine (3.75 mg off label) to help with the acid reflux which she says is a direct result of prednisone in some people. Lucky me.

I am at a loss as to what to do - have any other members experienced long term muscle pain during/after long term prednisone use? BTW - I walk 2- 2.5 km daily, do 15 minutes of yoga stretches daily in the hopes of helping with the pain. Can long term prednisone use cause a dependence on the drug? Are there other drugs that would help instead of prednisone? Is this a case of bad withdrawal which I know can sometimes take up to a year to resolve?

Very, very desperate.

[PMRpro Ambassador]

I suppose it could be the adrenal function still settling down but your cortisol levels are reasonable really. In terms of PMR/GCA you are on the only option besides pred, Actemra. PMRCanada uses enteric coated capsules she buys online to put her pred in - that might help the gastric problem unless yours is due to systemic pred which does happen.

Has the rheumy not wondered if this is fibromyalgia? It can have very similar symptoms.

[GratefulBailey in reply to PMRpro]

I'm sorry - I should have said I used the capsules to put my prednisone in - saw her suggestion on the forum, but it did nothing to help the reflux. If I try prednisone again, does this not start "the dance" again? Won't I face withdrawal again once I try tapering again??

[PMRpro Ambassador in reply to GratefulBailey]

If you try his suggestion of creeping up the dose it will take ages to come to a conclusion. On the other hand, if you were to try a decent dose for a week or so you can stop it immediately if it doesn't make a difference. You can take even a relatively high dose for up to 2 weeks and simply stop without tapering.

[jinasc]

When you take your pred, eat a pro-biotic yoghurt with a teaspoonful of manuaka honey in it.

This helps to reduce stomach problems.

[GratefulBailey in reply to jinasc]

Thank you for your suggestion - I had seen this on the forum before and I did try it. The yogurt/honey added to my discomfort ...nothing helped me. I put the tablets into empty gelatine capsules as well with no luck.

[GratefulBailey]

I am injecting every 3 weeks - 162 mg/.9ml; monthly blood tests at this injection schedule all fall in the normal range, except for slightly elevated liver enzymes the past 2 months. My rheumatologist is highly regarded and has been incredible handling my GCA treatment - except for one thing - doesn't "get" how bad my side effects have been through the entire time. I can't imagine going back on prednisone. It's puzzling how bad my leg pains are in the evenings/night. I have some degenerative arthritis in my lower spine and am wondering if my pain is caused by pressure on the nerves when I am sitting on the couch/in bed for the night.

[SheffieldJane]

with me my stomach pains began after a few months of Tocilizumab. I am afraid that is the culprit. I ceased it 4 months ago and am in constant lower abdominal pain of varying degrees. It is a documented side effect and my bowel and bladder function are affected. Colonoscopy showed no abnormalities. It is if my lower colon is raw and reacts to any acidic substance. I am awake with it now. Desperate for a remedy! Pred worsens it and Lansoprazole doesn’t help much.

[strawclutching in reply to SheffieldJane]

Oh gosh, that's awful. I'm about to start Tocilizumab and had stomach problems with higher Pred doses which have settled now. Couldn't bear to go back to that.

[SheffieldJane in reply to strawclutching]

I do believe that it is a relatively rare side effect. The GP has not been much help.

[strawclutching in reply to SheffieldJane]

No help GP's seems to be a nationwide problem.

[Alazarin]

I relate to your story, am only 1 month off pred, but have pain around knees and thighs, and my muscles are so weak. Pilates nearly finished me off, took me 4 days to recover, but I got referred to physio. So I am having my first session of hydrotherapy today.

I will report back

[PMRpro Ambassador in reply to Alazarin]

Pilates is very hard work - the class I went to was mainly middle-aged ladies but every so often young fit males appeared and you could see them thinking "How hard can this be if old ladies manage it?". Very few of them came back after a few sessions because they really struggled!

[Alazarin in reply to PMRpro]

that’s sort of comforting Pro. The physio said an hour is too much. Little amounts of time better.

[PMRpro Ambassador in reply to Alazarin]

It is of anything to start with - even hydrotherapy. Our mantra on here is to start small and low with anything - even going for a gentle walk: 5 mins out and 5 mins back to start and then build up a minute at a time until you get to the amount that you feel slightly next day! And in water - everything takes 7 times the effort it does on land so bear that in mind too! But your physio will keep an eye on you. I could barely manage walking in water for half an hour a couple of months ago - now I can manage a full hour of aquafit for rheumatology patients. I'm tired but not KO.

[Groovykindoflove1992 in reply to Alazarin]

Taking two weeks to recover from one session of pilates was the final straw that made me contact my GP, and that's when I was diagnosed!

[marionofnorwich]

I find cycling much easier than either walking or any other form of exercise but that may be because I am used to it