Lately it seems as though my fatigue and depression are getting worse. I've had PMR for about 3 years now and it seems as though I am going downhill in so far as exhaustion is concerned. I almost have no desire, and to some extent, no ability to get anything done. I have read that the IL6 pathway is directly related not only to the inflammatory symptoms of PMR but also to the accompanying fatigue. At the moment the fatigue is my main issue and extremely inhibiting of my life.
Also just to let you know, I'm currently on 9 mg of pred and I'm not experiencing any muscle issues at that level, but the fatigue, perhaps better called exhaustion, has been with me from the start irrespective of my pred dosage.
So I would be very much interested in hearing from anyone who has gotten relief from PMR fatigue through the use of tocilizumab (Actemra) or, perhaps less commonly, Kevzara (sarilumab).
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Ozark
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I think some people have felt a tremendous improvement with TCZ - but there are also some who experience fatigue with it. Like everything - people vary.
I guess I'd be willing to take the risk of experiencing fatigue with TCZ. It can't be any worse than what I'm dealing with now. And if I'm one of the lucky ones who experiences positive results concerning fatigue, then so much the better. Thank you for your prompt reply.
I'm finding that my fatigue is getting worse, not better. I'm now on 12mg Pred, diagnosed with PMR October 2020. The depression is also a problem. I'm told not to "do too much". Is having a shower "too much"? It takes me all day to recover from having a shower!! Not funny.
Depends how you have your shower I suspect. I just stand in the shower and let the warm water do the work - after all, we aren't "dirty" as such! Someone else was complaining about being exhausted after a shower - amongst the suggestions was maybe the water was too hot and they were standing in there too long. Vigorous arm movements while washing and then drying is also very tiring - I only make an effort for underarms and groin and wrap myself in a towel and bathrobe and sit in front of the computer to dry! Nor do I wash my hair every time - I have achieved once every 3 weeks, you have to build up to that though!
Many thanks for this. I will certainly think about having the shower in a different manner! And washing hair, too. I used to have thick hair that became greasy very quickly. Not now! Probably wouldn't need to wash it more than once a month now!
I am afraid that my fatigue on Tocilizumab is worse if anything as is the weight gain - I was not expecting this as doctors mainly emphasise the down side of Pred.
Thank you. Your response will certainly weigh into my decision as to whether or not I start on tocilizumab. I still may give it a try and if the results are negative I will simply suspend its use and return to pred.
To be fair a lot of people seem to do well on it. The research is there and proven. I myself got down from a GCA dose of Pred in record time, at least until 10 mgs. Also I had PMR for 5 years. We are all unique in our particular circumstances. I am sticking with Tocilizumab, I developed hypertension, high blood sugar, cataracts from my accumulated Pred dose.
I just got off the phone with my primary care doctor and she is insisting that it is unlikely that my exhaustion is caused by my PMR as it is well under control with pred. In other words, my laboratory test s are not showing inflammation but I still have fatigue and exhaustion. I personally don't buy this explanation. She's trying to convince me that my exhaustion is the result of depression because I am so isolated by Covid-19. It is true I am isolated as I live alone but I still don't accept this psychologizing of my symptoms of fatigue and exhaustion.
No I wouldn’t buy that either, too many of us are plagued by fatigue. Lockdown and the isolation makes it worse though. I find distractions like going for a drive ( driven) in the car and having a change of scene and routine can help me to feel better. I manage the fatigue by having daily naps after lunch - always 90 minutes for some reason. Fresh air is a boon too.
I agree with you. There are so many in this group who are suffering from fatigue and who I presume are under control with pred. That would imply to me that fatigue is a factor independent of good inflammatory control and is just in some way related to the underlying PMR itself.
Then your Dr is wrong ! of course isolation and covid was hard, but the fatigue is a separate issue ! The exhaustion and fatigue are totally different. Its the meds and once you get this sorted out , fingers crossed you will feel better. I am going through the terrible fatigue stage atm and have been for some time , i know its not just in my mind . Dont let her fob you off ! Good luck xxx
The fatigue with this condition or prednisone is profound. I think those who haven't experienced it think it's the same as feeling very tired after a bad night's sleep. When it hits me (and that's on most days) I temporarily lose the will to live...and I am a VERY optimistic positive person who loves my life (even my very limited life). I still work EVERY day (online)...I have to but I love it...When the fatigue takes me over, I am finished....if my home caught fire I wouldn't have the energy or the will to leave. I probably have adrenal insufficiency now (at 5mg) but I have experienced it throughout the PMR journey. My PMR symptoms are well controlled but I guess the underlying disease is hard at work.Anything involving immune responses (as in an autoimmune disease) demands a lot of energy from the body and perhaps that is one reason we are so so fatigued. The body is always trying to launch an immune response.
We will improve with time...I keep reminding myself! It feels like a life sentence at the moment but it is clear from this website that most of us will eventually get better. Just hang on in there. There is light at the end of this tunnel...though it is very hard to see it at the moment.
My wife (70 ) with gca , is with tapering prednisone and weekly acterma , from 3 months . I was in impression that acterma will do magic effect , we had lot of hopes , but so far no remarkable improvement ,weakness , fatigue , pressure on head , ear , eye continue . But sorry ,we can only wait and keep hopes !
Thank you so much for taking the time to reply. I certainly wish your wife and yourself the very best with the hope that your wife recovers fully from her GCA.
You are not alone in this, I have said all along for me the pain had some answers, pred, paracetamol etc, fatigue....none....it`s a wait and see I suppose, I`m at 7mg, and lowering but who knows, we are all different....We battle on together, keep us posted what you decide....
Yes! I'm one of those lucky ones who was able to reduce Pred steadily with the help of Tocilizumab. After I'd succeeded in stopping with Pred, I carried on with Tocilizumab, and gradually reduced that too. I have now stopped with Tocilizumab since two months. (possible I might have a relapse and will have to restart - my rheumy says there's a 50% chance of that but, for me, so far so good). Now, the fatigue issue: yes, it seemed to continue in the above process but it wasn't as bad as at the beginning of the illness. In other words, it seems to be a question of patience before one 'gets back to normal'. These days I'm far less fatigued although I do take a lie down siesta/reading break in the middle of the day- more as a means to stop myself relentlessly thinking I must 'get things done.' To add to the fatigue story, I'd say proper diet is key, including taking on enough water daily.
It is when friends say 'oh, yes, I get tired too', that I know they really can't begin to understand this horrendous fatigue, which certainly has been the worst thing I've had to cope with. I agree with those who find a rest after lunch beneficial - wouldn't be without it.
HelloI am reducing with tocilizumab and have only had fatigue when on methotrexate and reducing below 7 - i have LVV and won't really know if the tocilizumab is working until I have another scan as I have no symptoms but I would say I have felt a lot better on tocilizumab than when I was reducing below 7 without it
I was one of the lucky ones on TCZ. PMR for 7 yrs when I got GCA. Went on TCZ a year later. It took 3 months to begin to feel better, then a year to taper off Pred. Did experience a number of withdrawal symptoms. Once off Pred it took a few months for fatigue and hair and skin etc to resolve. I now feel good. I run a little every day, am working full time, manage lots of little projects. Could never have done that on Pred. Have been onTCZ for 3 years and take it every 3 weeks now and hope to taper off. Zero PMR symptoms for a couple of years. Good luck to you!
Hi, great to hear that TCZ was so good for you and that you’re back to such an active life 😊I wonder from your post, whether you feel that pred actually caused fatigue as well as other things? I’m feeling utterly exhausted after six months on it - and I wasn’t at the start - then it was ‘just’ the pain!!
Absolutely, either the disease or the Pred. Fatigue was a constant companion which others who had not experienced did not understand. We have to advocate for ourselves, seek and accept help and stop activities when our body tells us to despite other’s expectations!
Sorry to hear about what you’re experiencing. Actually, I have been just the opposite as far as fatigue goes. I haven’t noticed any change, but I’ve always been on the energetic side. I am down to 5mg.Best wishes.
Are you off of prednisone completely? I am down to 5mg and have never experienced fatigue, but then I’ve always been an energetic person. I walk 5-8 miles 5 days a week & maintain our 2 bdrm condo. I also bath & groom our miniature Goldendoodle weekly. On the down side, I have started to feel occasional aching in both my upper arms & hope my PMR is not saying‘I’m still here’…
I have not seen this information on here and no body mentions it but I just have to post it because you need to know this rare side effect, I was was diagnosed with GCA on December 2019 and put on high dose of Actemara 60 mg when I came home from hospital as I almost lost my eyesight. I have 6 ulcers and it was awful even when i managed to reduce to 20mg so they put me on Actemara 4 months later I was diagnosed with cancer and I found this!
Oncologists should be aware of important safety information about ACTEMRA.
Malignancies were observed in clinical studies of ACTEMRA. The impact of
treatment with ACTEMRA on the development of the malignancies is not known, bu t
malignancy is a known risk of biological products that suppress the immune system.
ACTEMRA is an immunosuppressant and may increase the risk of malignancies.
Reporting Adverse Events
If you are consulted to a see a patient with cancer at any time after receiving
ACTEMRA therapy, it is important that you report the case, even if you do not think
there is a causal relationship. The information that you, as an oncologist, provide
about these events may inform therapy and monitoring decisions for future patients.
Reporting is easy and maintains patient confidentiality. Your patient’s name or
contact information is not needed. HIPAA does not apply to this adverse event
reporting. You can report your cases to Genentech or directly to the FDA:
Genentech at 1-888-835-2555
MedWatch (FDA safety information and adverse event reporting program) at 1-
I have not seen this information on here and no body mentions it but I just have to post it because you need to know this rare side effect, I was was diagnosed with GCA on December 2019 and put on high dose of Actemara 60 mg when I came home from hospital as I almost lost my eyesight. I have 6 ulcers and it was awful even when i managed to reduce to 20mg so they put me on Actemara 4 months later I was diagnosed with cancer and I found this!
Oncologists should be aware of important safety information about ACTEMRA.
Malignancies were observed in clinical studies of ACTEMRA. The impact of
treatment with ACTEMRA on the development of the malignancies is not known, bu t
malignancy is a known risk of biological products that suppress the immune system.
ACTEMRA is an immunosuppressant and may increase the risk of malignancies.
Reporting Adverse Events
If you are consulted to a see a patient with cancer at any time after receiving
ACTEMRA therapy, it is important that you report the case, even if you do not think
there is a causal relationship. The information that you, as an oncologist, provide
about these events may inform therapy and monitoring decisions for future patients.
Reporting is easy and maintains patient confidentiality. Your patient’s name or
contact information is not needed. HIPAA does not apply to this adverse event
reporting. You can report your cases to Genentech or directly to the FDA:
Genentech at 1-888-835-2555
MedWatch (FDA safety information and adverse event reporting program) at 1-
Hi Ozark. I have had awful fatigue but with GCA (although also have had PMR for four years). Had five months when getting up having a shower etc exhausted me. Couldn’t walk very far at all as was so fatigued. No work for five months. Started Tocilizumab six months after diagnosis and eight months after symptoms began. Been on Tocilizumab seven months now and am starting to feel better at last. Can’t quite believe it but very grateful. Hope improvement continues. All a big unknown. On 6mg Pred plus Methotrexate. I too got depressed as it all seemed unending and affects all parts of life. There is hope although it seems to hide away at times! All the best of luck to you
Hi, we share a similar case history except I am a tad younger at 72. It will 3 years next month for my PMR and am at 10 MG which keeps me from having major muscle aches. No fatigue and no other drugs other than Actonel.
I may soon start Leflunomide at my doctor's constant urging to try and reduce the Prednisone more quickly. Apprehensive about that trial. Are you getting good sleep and nutrition? Some exercise is also beneficial, it is difficult if you are fatigued but try to fit it in somewhere even 15 to 30 minutes a day is good for me with simple arm back and leg stretches - yoga.
Best of luck finding help from the many knowledgeable users of this fantastic forum.
think it must be an individual thing. I am now after almost 3 years on 5mg tapering to 4.5 I have the hottest shower I can imagine in the morning and as ,my surround has , put in by my son, I dostretching exercises while there. This starts my day well. I try to do more exercises during day, or walk in park with Lily,dog
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Mad Magazine was available in UK and I guess I enjoyed its subversiveness. You and I are the same age so it's not so surprising that we both came across this publication. Vootie!
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