Weary, PMR Diagnosis

[Popsca]

Hi Everyone, I am here because my husband was diagnosed with PMR about 2 weeks ago. His pain started in his shoulder and gradually went full body over the past month. We went to the ER and then to a Rheumatologist. Never heard of this before. Upon researching. I discovered that this is an adverse effect of the vax, which could happen up to 3 months after taking the shot. He had a booster exactly 3 months ago. We don’t know for sure if this caused it, but he has PMR . My husband is in so much pain. It hurts me because I don’t know what to do. He is on Presd med. ER have him 50mg, Rheum reduced it to 20mg 3 days later and now he is reduced to 15 and so on over the next two weeks. Does this crippling disease go away? Should he get any other tests? He has a an appointment coming up with his PCP. I hope nothing else is wrong . We are both in despair. Thanks for any tips. Good luck to all who has PMR.

[SnazzyD]

Oh dear, my sympathies! Most people have never heard of PMR until it’s their own immune system that starts to attack its own host. Nobody really knows what causes it but commonly it’ll come after a history of illness, injury, unrelenting or extreme mental or physical stress and of course vaccines. The reason for this is probably the person’s immune system being kicked into high action, doesn’t turn off. Saying that, there are plenty of people here who have had multiple Covid vaccines with no ill effect; it’s really down to the individual. You’ll get plenty of advice so sit tight. The FAQ’s is a good place to start.

One question though, did your husband get any relief at any point with the Prednisolone? The usual starting dose is between 15 and 25mg held for 4-6 weeks before reducing. 50mg is more commonly used for treatment of GCA, the sister condition that affects the head more. The idea is that the steroids prevent the inflammation causing damage and the pain and then slowly reducing the dose to the minimum level that controls the pain for that person. It isn’t a cure. Meanwhile the autoimmune activity that produces the inflammation will die down of its own accord over a few years. Ideally the person should not be in lots of pain during this time which should be possible if the steroids are not reduced too quickly beyond the level needed to stop the current level of inflammation. If the pain is still there, you don’t reduce. Did the docs explain their rationale?

[Popsca in reply to SnazzyD]

Hello Snazzy D, Thank you for your reply and information. Yes, my husband had relief after the ER visit and 50 mg of the Pred. But 2 days later, he saw the Rheum. and she refused it to 20mn for two weeks followed by 15mg for 1 week and then 5 mg. He has been in EXCRUCIATING pain ever since. Clearly from reading the replies, the Rheum. set him on a path of destruction by refusing too fast. I’m going to find a more experienced Rheum doctor. I agree with your overall assessment. Thank you.

[PMRpro Ambassador]

If you want to learn about PMR - go to our FAQs post which has dozens of links to the sort of information you are looking for. It will keep you well occupied over the Easter weekend. The link is just below your post, above my reply.

I have to say I am a bit concerned at the speed of the taper being imposed. The 50mg was too high for PMR unless he showed any symptoms ofossible GCA and 20mg is the more usual starting dose but it is more usual to leave the patient at that starting dose for 3 weeks at least and 5mg steps down are far in excess of the recommended 10% of the current dose for tapering - otherwise known as titration to identify the lowest effect dose for your PMR and your body. You'll find it all explained in the FAQs.

There is no single cause of PMR - the consensus is that it is the culmination of a lifetime of insults to immune system that put it under stress. Eventually one is the straw that breaks the camel's back and the immune system goes haywire and turns on the body creating an autoimmune condition. What you get labelled as having depends on the predominant symptoms.

That final straw may well have been the CV jab for your husband - it it could equally well have been the Covid you got because you hadn't had it, or the flu or shingles jab, or flu or shingles, or extended stress at work, in the family, moving house, other illness or infection or surgery. Or an environmental or chemical experience. In combination with a genetic predispostion. So while you see it as being linked to the CV jab - many of us did have flares so not saying it wasn't - the real truth is that his body was on its way to developing PMR and the jab speeded it up.

Did the 50mg relieve the pain? Did the 20mg? IF it really is PMR, pred should have relieved the symptoms by 70% within a week or so and if that hasn't happened, then he is either already on too low a dose or it isn't "just" PMR. Pred doesn't get rid of the pain 100% for many but there shoud be a massive improvement. But he too has to do his bit - with lifestyle changes and appropriate pacing for both less pain and relief of the fatigue which is a major component of all autoimmune illness. Cutting carbs is a good dietary approach - reducing the risk of weight gain with pred and development of steroid-induced diabetes but also because sugar and simple carbs are pro-inflammatory and many of us find they really don't help

This a good summary relevant to that

healthunlocked.com/pmrgcauk......

[Popsca in reply to PMRpro]

Hi PMR Pro, Thank you so much for your reply. I love this site and am learning so much in so little time. I’m learning more from this site than the doctors. I’m grateful that the Rheum informed us about the PMR. However, after reading the replies, her treatment plan is totally off. Yes, the 50mg from the ER doctor relieved him from pain for about 2 days. Then he saw the Rheum doc after 2 days and she put him on the 20mg for 2 weeks followed by 15mg for 1-2 weeks and then 5mg, something like that. I lost track but my husband is following her instructions and is in PAIN. I mean pain like a wounded animal in his sleep. It’s sad. I am going to take him to another Rheum for a second opinion and hopefully more experience. Sadly, many doctors today are ill informed, inexperienced, burned out or don’t care. I agree with all of your assessment of this. My husband just has a total knee replacement in November 2021, which caused excruciating pain followed by the jab and jab booster followed by putting in retirement papers after 37 years on the job. I think all of this is contributing to his stress and pain. I am thankful for this site and will read the FAQs. We’re going to take Cryotherapy sessions this weekend and join a fitness center that has a salt water warm aquatic pool. I hope this helps. Question- should he put himself back on a higher dose while in pain or see another Rheum first and get their advice? I also made him an appointment with the PCP for a physical. Thanks again for your insight.

[PMRpro Ambassador in reply to Popsca]

I think seeing a rheumy first would be a good idea if he can cope - he has my sympathy, I had 5 years of no pred because i wasn't diagnosed and I can still remember the relief 6 hours after the first dose of pred!

Honestly not sure cryotherapy is a good move - one lady on here did have them as part of a rehab in Germany and she found them awful. I did aquafit in a warm pool every day Mon-Fri and that allowed me to be flexible enough for a few hours to then also do Pilates or Iyengha yoga - but if the pool was cold, I didn't go in. Heat is my saviour, cold doesn't help. In fact, on a cold foggy day recently I was in town and got thoroughly chilled and could barely crawl back to the train and home. My leg muscles were like frozen meat!

[DorsetLady PMRGCAuk volunteer]

Hi,

Maybe have a read through this to give you a better idea, and the the other FAQs as suggested -

healthunlocked.com/pmrgcauk...

..and don't blame the vaccine, trouble was probably already brewing and that was the final straw.

[Popsca in reply to DorsetLady]

Hi Dorset Lady, Thanks for your reply and link. I will read it. I’m not totally blaming the vaccine, but it certainly contributed to his PMR.

[piglette]

Your poor husband. One thing he should learn NEVER reduce if you are in pain, the PMR will bite back!

[Popsca in reply to piglette]

Hi Piglette, I love your site name. Piggies make me happy! Thanks for your reply. After forwarding the replies, I definitely think his treatment plan is off. The Rheum doctor should not have taken him of the higher dose so soon. This is why he is in excruciating pain. I will share all of your replies with him and find another more experienced doctor.

[piglette in reply to Popsca]

It definitely seems he needs a new doctor. Good luck.

[PMR2011]

Don’t despair, you are doing well too seek more information. The good news is, PMR is usually very manageable with proper treatment and some forethought on balancing activities with rest. Data also shows that men usually have it shorter than women, though we all manifest is slightly differently. Be sure to ask the doc lots of questions, but also be aware some docs are much less familiar with PMR, so learning what you can before the apt is helpful.

[Popsca in reply to PMR2011]

Hi PMR 2011, Thank you for your reply and encouragement. I really appreciate it. I am so grateful for this site. I will educate myself and prepare a list of questions for his next appointment. Today, we have to manage our own health. Doctors are not reliable anymore. Thank you. I wish everyone peace and healing on this site.

[FLSurfing_Dad]

I’m sorry to hear about your husband and I can say that this is a great website for information. I was diagnosed in 12/2020 here in Fl and had no idea what I had at 59yrs old. I would use a website Healthgrades.com for your next Rheumatologist. I found a very good one who did training in this condition. Once you find a tapering plan that works for him it will get better. I had only 1 -2 flare ups on my tapering plan. I started at 60mg for 2 weeks and dropped by 10% till I got down to under 20mg. We then changed my plan due to a flare up to reducing 1mg each month. I’m currently at 5mg/day. My rheumatologist warned me that 4mg may be a sticky one to break through and to be patient. Head up! Hang in there and backing off exercises and activities has helped me and have your pcp check his testosterone level as well. Mine was low when I got this and I think it has helped me with being on testosterone.