Rising Rheumatoid Factor

"in some cases the  disease can disappear altogether as the steroids burn it out"

Steroids have no effect on the disease itself - they are purely there for symptom management. PMR is generally "self-limiting" for 95% of patients and it will burn out eventually - but it might take a long time!

Hi Eileen,

I do remember my Rheumatologist telling me that the meds with control the symptoms and that the disease will eventually burn itself out.  I just always feel like I am struggling - not major pain but annoying stiffness and fatigue.  Is everyone else like this?  Obviously at higher dose I am better but my doctor is VERY animate about keeping the dose low! So I always feel good but borderline like 85% okay....

Any ideas about the rheumatoid factor?  What is the normal range for someone with PMR?

Hi Cyn

It does sound as if you may be on too low a dose if you are having annoying pains. It really depends how bad it is. Most people are never lucky enough to have no pain. I have a high rheumatoid factor but the rheumie reckons I do not have RA. I also have a very low temperature and blood pressure. My brother reckons that I am on the wrong planet! 

If you are stiff you probably need a bit more - probably not a lot. The fatigue is nothing to do with pred I'm afraid unless you are one of the people pred makes tired. The fatigue is due to the ongoing underlying autoimmune disorder that causes the symptoms we call PMR - just like flu in a lot of ways - and the fatigue must be managed by lifestyle changes, pacing and resting appropriately. And yes - really almost everyone has the fatigue problem. 

Maybe the links in this post on another PMR forum will help explain:

https://healthunlocked.com/pmrgcauk/posts/135650532/fatigue-pacing-spoons-and-a-gorilla...

Rheumatoid factor is a tricky one - there isn't a normal range as such. Some people have rheumatoid factor, others don't. You can be perfectly healthy and have a positive level, be negative and still have severe RA! Many doctors think that being more strongly positive is an indicator that at some point in the future you are more likely to develop RA. In which case monitoring makes sense - although taking medication "just in case" doesn't make any sense to me given how unpleasant some of the meds are! 

Snap - I feel fine most ot the time although I've given up any sport now after injury and a few other factors made it a problem.

I find the 30% figure ?interesting - I think the 5% is too low too. Do they have any evidence for their opinion?

I don’t know if they have evidence, but both Drs. said it independently to me. I didn’t research it, because it doesn’t change the fact that I appear to be in the 5-30% group.  I feel a little less sorry for myself if it’s 30% but worse for the fact it means more bad for more people!  Either way, my PMR IS NON-remitting so far. 

Bethune, I like to think you PMR is under control. I think if you are living total PMR pain free, no longer on Prednisone with no problems, then PMR is in remission. I probably is the cause is probably still in the body waiting for the next attack. ☺️

If you see them - do ask them!

You did have a 9 month period with no meds - I had 5 years with no meds right at the start because they wouldn't/couldn't diagnose it. It never let up then and as far as I can tell hasn't let up since I went on pred! I'm perfectly happy on pred - but the rheumy is now getting itchy. He's already had me try methotrexate - but since his aim is not really getting off pred altogether I'm darned if I will put up with the side effects of the mtx just to get to get to a couple of mg less pred. It was not a pleasant month!

I am beginning to wonder whether “bullying your patients “is a component of the rheumatologists curriculum ......so many of them seem to have this  skill in their toolbox.  We go to experts for help.... why do we often leave feeling helpless as well as inadequate in addition to our pain?   I finally found a nice new gp    With whom I discussed my rheumy’s bullying.  Her response was very simple.  She said first of all quality of life is the most important consideration.  She pointed out that people with  athsma are not expected to reduce their dose and stop breathing in the process.  She encouraged me to continue tapering  at my own pace and offered her support!!!!!!!   Did I die and go to heaven?  Why am I feeling better!

 It is the same thing for me when I visit my rheumatologist. Every time I go I tell myself I’m going to find another one. His main concern is to reduce my prednisones as much as possible and I get that since there are many side effects. The thing is he doesn’t understand what it’s like to get up in the morning exhausted Until you’ve taken your medication and hoping to get through your  workday five  days a week. I work in a hospital and my rheumatologist is in that same hospital. I care deeply for my patients and when it’s my turn to be a patient I feel like I’m being half cared for. SometimesWhen I’m not feeling great I just don’t feel like taking care of people myself but I always do my best.He also doesn’t understand that there’s certain  things that are important  to certain people for myself as being able to stay active and feel normal. I’m on 7 mg only and I deal with the rest of the aches and pains. It’s bearable but sometimes tends to get overwhelming mentally because I never feel hundred %. It’s like always feeling like you’re coming down with something . I think if the rheumatologist had a chance to feel this way perhaps their method of treatment might be slightly altered! 

Now you come to mention it - I have to agree with you! Though I think there are a lot of doctors in general with just a touch of the trait there are a lot of rheumies who seem to have honed it to a fine art!  I wish I could get inside the head of a lot of them - they obviously wanted to be in a caring profession at one point but something went wrong and it is something that seems very common in the field. They seem either to be terrific or the other thing, nothing in between. I can understand getting a touch disillusioned with rheumatology - there are no cures and mostly you see the patient getting worse despite all your attempts to ensure otherwise. They fail to understand their role is to do the best they can to make life as livable as possible. But surely they knew that before they chose which way they wanted to specialise? It isn't just the NHS - it is the same in the USA too.

You seem to have found a doctor who knows what doctoring is about: Care, empathy - do no harm and improve QOL. Stick with her!

I would definitely look for another rheumy - being treated by a colleague isn't ideal under many circumstances (it can work, my husband wouldn't be alive if it were not for his colleagues getting involved but that was oncology!) 

What dose are you good at? Have you seen this research?

https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings

7mg is definitely not really a problem on that basis - and if a couple more mg makes normal life possible - where is your rheumy's problem? (Yes, I know where his problem is!) It is all very well saving us for our futures in 20 years - but if we can't live now it isn't much use is it?

I am currently on my fourth rheumie, I think I am going to give them up altogether as they are bad for my health. It would help if they knew something about PMR and steroids. 

Yes, to you all it really is about the quality of life. Rheumy do not seem to understand this, as it has been said before, if they could have just one day of PMR with pain and all of the Prednisone side effects. Then maybe they would be more sympathetic to our plight. That bring a smile to my face. ☺️ I think sometimes of the pain when I was in the wheelchair and how thankful I was for Prednisone. The forum helped me to get moving. Thinking positive with a smile. ☺️

I am going to see my GP to get another referral.  I never felt comfortable the first time I met the Rheumatologist and I asked to change doctors but the receptionist said I couldnt because tgey are colleagues and will gack each ither up!  I am going to change....

Exactly!

Yes, it took me 9 months to get diagnosed... but I found an excellent woman rheumatologist who diagnosed me in 5 minutes and was amazed others didn’t. ( they were men, and totally minimized my symptoms) I am otherwise healthy , fit, energetic and look a bit younger than my age so that doesn’t help getting medical attention. 

The female moved but her colleague is also understanding and has tried me on 5 or more different meds to help me get off prednisone.  They didn’t work and she has settled in on letting me self medicate my amount of  prednisone.  I also have a bit of atypical RA  and osteoarthritis, so they act up every so often.  Now I’m trying to get down from 15... but I had had a flare and had to go up to 30...yikes!  I  was glad to get back to 15 quite quickly. but now it’s very slow... the good thing is my QOL is excellent.  I’d rather be pain free and happier from 68-88 ( or less) than live longer miserable and in pain!!

Nope😞 I’m on 15 mg a day right now.. but it works.  Would like to get back to <10, but right now I’m stuck at 15. 

I hear you!

Bethune, at 15mg wanting to get to 10. When I was at 15 I tapered to 12.5, using a 1-4 DSNS taper, it worked very good for me. Good luck on your taper. Try to think positive and smile. ☺️

I can hear your sense of despair and feel so sorry for what you are going through.. Perhaps you there is another physician who can provide you with more support and understanding? Its just so hard to battle the illness as well as being made to feel bad about not being able to comply with their expectations of us. ..... I do hope things change fie the better soon.