Is there a list of PMR/GCA comorbidities?

[Ciar]

Since I came down with PMR 16 months ago, I’ve had a lot of other crazy issues crop up. I have to fight with my docs to stay on even a low dose of prednisone, as they keep blaming my symptoms on other diseases (even the ones that are obviously PMR like shoulder and hip pain). While I was pushed down below 2 mg in spite of obvious PMR symptoms, I developed Interstitial cystitis, widespread neuropathies, extreme sweating, and constant headache and migraines. I have recently increased my prednisone to 7mg which controls about 70% of my PMR issues, and all of these strange new symptoms that aren’t PMR are much better (though like my PMR pain, not completely gone). Since I will have to fight with my doctor to stay on 7mg or even increase that, I’m hoping to bring journal articles and the like to convince my doctor of the benefit of adequately controlling my symptoms. I’m hoping our experts can steer me to info for my doctor that might show her the need to control my PMR. Is there a list of other diseases that occur with PMR out there, and is there a reference showing that people with uncontrolled PMR are more likely to develop GCA? So frustrating that we have to educate our doctors and fight for treatment!

[piglette]

Good luck Ciar, it is very difficult to fight with your doctor, I wish I knew how.

[Ciar in reply to piglette]

Crazy isn’t it. And PMR isn’t even all that rare. Should be standard treatment, but as I read here over and over...my situation is not unusual.

[HeronNS]

There is this pinned post:

healthunlocked.com/pmrgcauk...

Which has some reading to keep you going until the Aunties come on line.

[Ciar in reply to HeronNS]

Thanks so much Heron. I’ll copy that for my appt.

[jinasc]

Follow this link : pmr-gca-northeast.org.uk/us... Read and Download: BSR & BHPR Guidelines for the Management of Polymyalgia Rheumatica (PMR)

These guidelines were prepared by a working group consisting of members of the rheumatology and general practice communities, together with patient representatives. They are now officially accepted as BSR guidelines.

Reducing you too fast, from 15mg (I am assuming you were started on 15mg) if not was it 20mg? Reducing you down to below 2mgs in 16 months, in my opinion, is out of the question. The Guidelines say at least 2 years for remission and then it seems to be a men only in remission in 2yrs. reducing down to 2mg, in 16 months is going to cause and yo-yoing leads to more problems.

I am extremely unhappy with the migraines, are they frequent or one sided?

When you say'extreme sweating' is it constant like a 'fever'?

Do you have difficulty chewing? Have you lost weight?

Finally, can you change your GPs if all of them in the practice are singing from the same Hymn Sheet?

I will also send you a PM.

[Ciar in reply to jinasc]

Thanks for helping, Jinasc. I was started at 10mg, and it worked amazingly well though I’ve never been rid of all my PMR symptoms. The reduction was over about 8 months, yes, way too fast. I know so much about this disease from all the good people here!

I don’t think I have GCA, just have headache, no jaw issues, fever or weight loss (well just 5 pounds over the 8 months slowly and it’s a good thing 😀).

I’ve had just terrible trouble finding a doctor. There’s a rheumatologist shortage in our region (NW USA). My first gp didn’t know what PMR is and I self diagnosed using the internet. It took 5 long months to even get on 10 mg. It took 3 more months to get into the rheumy and diagnosed, only to have him aggressively push me off prednisone. I’m not going back there, and I’ve switched GPs, my new one said it’s ok to go back up to 7mg when I asked, but ominously she replied “but you will have to come back down.” So that’s why I’m asking for resources to take to my next appt.

[Mstiles in reply to Ciar]

Hi Ciar,

I can relate! I have the same problem with treatment in Northern California.

I was diagnosed with PMR/GCA in January. I had Graves’ disease before that. communication with the doctor has been a problem. No support groups here either

I Haven’t found any other options yet to my rheumatologist.

You will find so much support from this forum, it’s wonderful.

[Ciar in reply to Mstiles]

The shortage of rheumatologists is literally killing us!

[Sandy1947]

Get a new doctor. Fighting is not an additional symptom you need to face.

[mcookie63]

Doctors really want us off preds due to causing bone loss (osteopenia) but it's hard. Did your dr do blood work to check sed rate, c-protein or check for rheumatoid arthritis or anything else? It will be 10 yrs for me with PMR and I am trying the dead slow method to reduce where I feel ok. Drs keep pushing probably so they don't get sued when bones start breaking due to preds. Specialists are Just overpaid Drs. I would stick with your new GP and see if she can help you more and if your new GP can't keep searching. There's got to be better Drs out there. Good luck! Praying for u!

[Ciar in reply to mcookie63]

He’s great for running tests. My sed rate is trending upwards again but only at 15-20. Crp was originally what was particularly high for me, but that’s ok still. No elevated RA markers, and I’m sure I’ve got PMR due to great 6-12 hour response to 10mg prednisone. I’ve got high bone density. I’m not going back to that rheumy...after 10 months of this treatment I know better.

[PMRpro Ambassador]

I would be voting with my feet and seeking a rheumy who treats the patient not the textbook. PMR lasts at least 2 years and a median of 5.9 years. So why is your current doctor trying to force you to reduce below the dose you require to manage the symptoms?

medpagetoday.com/rheumatolo...

discusses the duration of PMR.

Does this help:

academic.oup.com/rheumatolo...

mentioning "and 16–21% of patients with PMR may develop GCA, particularly if left untreated"

The Leeds rheumies started asking patients if they had bladder problems after I mentioned it to Prof Mackie - and were surprised to discover that, yes, interstitial cystitis can be part of PMR.

By the way, the osteoporosis story with pred is greatly over-egged. My bone density has barely changed in over 7 years on pred.

[Ciar]

Thanks PMRpro, you’re an awesome source of knowledge! After reading so many of your posts I’ve been inspired to become more informed myself. Have been reading medical journal articles where I can find them online. I have left the rheumy behind, but it’s unlikely I can find another without driving 3 hours or more (one way). The rheumy I had was the only one who would even schedule new patients within 200 plus miles of me. I am hopeful my new gp will handle this better, she is very thorough and has been so much more accessible and is at least familiar with PMR. If that doesn’t pan out, I will be taking some longer trips!

I’ve a strong suspicion that this rheumy I see has a one size fits all approach to everything. He does a lot of in office tests (makes a lot of money) and after 2 dexa scans I know I have excellent bone density, so that’s not a good excuse for not treating me.

The interstitial cystitis is worse than the PMR! The only interesting thing they found in me after so many expensive tests was white blood cells in my urine. More Inflammation? My prednisone increase to 7mg has reduced but not completely eliminated my bladder issues. I think I may need more prednisone or maybe even should start over at 15 mg ...what do you think? I wish you were a rheumy in my area!

I will check out the references you mentioned.

[PMRpro Ambassador in reply to Ciar]

"makes a lot of money"

Says it all I suspect...

There is a medication for use with interstitial cystitis - explore that maybe????

[Ciar in reply to PMRpro]

There are many, none specifically for that. It’s a hard thing to treat.

[Insight329]

healthunlocked.com/pmrgcauk...

Here is a link to artcles that have been discssed in the forum that might be of interest to you. Find the section of Treatment of PMR/GCA.

Keep an eye on your headache and any vision changes. (No pun intended.)

[Ciar]

Thanks,I will, but I’m so amazed at how much better the headache is on 7mg. I’ve been using your post on the articles list...thanks so much for compiling it!

[Mrs-CJ]

Just a thought.....since you mentioned you feel a bit better at 7 mgs perhaps your adrenals are having trouble waking up. Prednisone of about 8 to 7 mgs equals about what our bodies would produce naturally. It could be you need a bit more prednisone and that you need to pause at that level for awhile.

[PMRpro Ambassador in reply to Mrs-CJ]

Plus you have to remember that people absorb different amounts of pred - from 50 to 90%. Doctors work on the average, 70%. If you are a 50% person then at 8mg you are really only getting the equivalent of 4mg, not the 6mg-ish the doctors assume.

[Qubbie]

I am trying to piece together an injury to pmr. I believe there is a connection

[PMRpro Ambassador in reply to Qubbie]

It may have been that an injury was the final stress insult to the immune system that sent it into a tailspin and it started to attack your body - but while many people had had injuries or illness or emotional stress in the run up to PMR manifesting there is nothing that is 100% common to everyone. It is a culmination of factors and eventually a straw break the camel's back - there may be a few for whom it was an injury but there many who had not had an injury for years, if ever.