I need a new direction!

[fmkkm]

Greetings, hope everyone had a peaceful Saturday!

I am coming up to the end of my 7th year since being diagnosed with GCA. My good Rheumatologist retired 3 years ago, I saw her Nurse Practitioner after that for 2 years until she moved on. Both of them understood the possibility of someone having GCA that does not go into complete remission. I have since been relegated to a Physician Assistant who does not believe me when I tell her my symptoms all come back when I go below 3.5 mg., she tells me now that I have adrenal insufficiency and could not have GCA because it does not last this long. This is the same person who told me last spring that she couldn’t do adrenal tests because it wasn’t her job!! I am done with her, I will find a new Rheumatologist. I’m also changing to a new regular doctor who is an Integrative Medicine Specialist.

This is what I’m thinking;

1. It’s okay to stay at 3.5mg if it improves my quality of life. 2. When it no longer works to decrease, stop, yoyoing is bad for your physical and emotional health. 3. It’s okay to fire your provider and move on. 4. After this long shouldn’t I be getting some arterial scans? 5. Would I get better treatment at this point from an Endocrinologist?

Last, interesting article I found that gave me a little hope.

ard.bmj.com/content/early/2...

Thanks for listening!

[PMRpro Ambassador]

1-3 - Absolutely!

4 - Would be a good idea to screen for AAA (abdominal aortic aneurysm) maybe.

5 - Why? if you have a rheumy substitute who lets you chug along at 3-4mg, that is usually enough as an adrenal substitute and it depends how you feel. Prof Dasgupta, top name in GCA in the UK told us he often keeps patients at 2-3mg long term as it reduces the risk of relapses.

I've pointed that article out a few months ago - comes from my rheumy here in Italy - and I think it is one of the most important publications for years. Now we need the rank and file to get it into their heads ...

[fmkkm in reply to PMRpro]

Thanks for the input!

I must have missed that article but I’ve saved it now! I really liked Recommendation 5,

“Once remission is reached, it should be maintained with the minimal effective dose of medication; drug-free remission may be achieved in a proportion of patients.

The task force discussed whether the maintenance of remission, or rather, the prevention of a relapse should be the preferred treatment target.”

[S4ndy]

I've not got GCA but do have PMR. I started taking prednisolone in 2016 on a 30mg starting dose. I tried reducing and got to 5mg. Anything below that and I get symptoms. My Rheumatologist knows his stuff and has kept me a maintenance dose of 5mg for the last three years. No flares in that time. So currently happy to remain on that dose. I am seeing my new GP on Tuesday and I think that's going to be an experience as I am not sure how educated in PMR they will be. I will help out with the education if necessary 😂

[fmkkm in reply to S4ndy]

Thanks S4ndy! My Rheumatologist that retired was like that. I was thinking about finding a new rheumatologist but I worry they will be just as uninformed as the PA I go to. Maybe as PMRpro says, just chug along at 3.5/4 and not succumb to the pressure to reduce.

Let us know how the visit to the new doc goes.

[Raven1955 in reply to S4ndy]

Yes, it's always like leaping into the Great Unknown when you get a new GP or rheumy. At least if the new GP gives you any grief you can reference you rheumy that you've had for many years that knows his stuff. GP's will usually bow to the wishes of rheumies. I get to see my new rheumy on Tuesday also, the 5th one in 7 years. Only had to fire 1 so far 😊. After 7 years they realize you have a good understanding of PMR and prednisone. Heck, we have Masters Degrees in it!

[Blondiblue]

I probably had PMR/ GCA for 11 years. Couldn't tell exactly because I was on Actemra which made my inflammation scores constantly near zero. The GCA was diagnosed 6 yr ago, doctor thought I'd always had it. Toward the end, rheumatologist didn't believe my symptom of weakness (or any of my symptoms). I quit him. I'd always struggled to get off prednisone and couldn't. Finally I got tested for adrenal insufficiency. Result was within range. Eventually, I raise my 3.5mg to 4mg on my own. I have experienced huge improvement and am off Actemra (happily).

[PMRpro Ambassador in reply to Blondiblue]

Actemra only gets half of patients entirely off pred - there are at least 3 underlying causes of the inflammation in GCA, Actemra only works for one of them, biologics are highly specific. You need some pred for the others. It was clear from the clinical trials - the doctors apparently can't be bothered to read the results.

[Lenore58 in reply to PMRpro]

Hi PMRpro,

Where can I read about the 3 underlying causes of GCA? Is it in the article referenced above? Also, you have said that PMR is actually more a term for a collection of symptoms that are caused by other underlying disease (like sometimes cancer.) Where can I read more about this? (Scholarly/academic articles are fine with me.)

[PMRpro Ambassador in reply to Lenore58]

ahajournals.org/doi/10.1161....

ncbi.nlm.nih.gov/pmc/articl...

When I say 3 underlying mechanisms for the inflammation I'm desperately trying to keep it simple!!!!! All pred and even Actemra can do is deal with the inflammation that has been created - pred deals with pretty much all of the options, known and unknown, Actemra is highy specific and deals with ONE. Mopping up the inflammation stops too much damage while the autoimmune process chugs on in the background until it gets bored and gives up. That is the only option at present.

There has been a lot of progress in the last few years as to the source of the mechanism and the second paper - which I hadn't seen before - illustrates that and how complex it will be to identify a place to aim a curative approach, always supposing one is even possible.

PMR is a name for a set of symptoms which are very vague and vary from person to person. A study in Finland found about a third of initial PMR diagnoses are found to have another diagnosis that fits it all better. GPs tend to get the blame of course!

emedicine.medscape.com/arti...

racgp.org.au/afp/2014/june/...

Have fun

[Lenore58 in reply to PMRpro]

thank you so much for these links. I am beginning to make my way through them… middle of the night insomnia provides a perfect opportunity. Started with the treat-to-target one, which contains so much encouraging info in terms of more research interest and involvement and collaboration. But I can’t say that I’m encouraged by ramifications to what they are finding. GCA is even more invasive and threatening than I thought.

[Raven1955]

If your PA will keep you going with a prednisone prescription for as much as you need, I'd say that is what matters. You obviously know what's working for keeping everything under control. In my 7 years of PMR I have had 1 PA and 4 rheumies (will see my 5th one on Tuesday). In my area they retire or move on to the big cities for more $$. I fired my 2nd one but have been able to work with most of the rest of them. My main focus has always been having a good supply of prednisone available to allow me to maintain my quality of life. Rheumy #2 was a disaster and finally wanted me down to zero dose in 7 weeks. We parted company in 7 minutes.

I'm down to 1 mg dose and am willing to discuss further reduction with my new rheumy but want to see how current her knowledge of PMR is first. At least I have a fall back position with my PA - she will write a new prescription for prednisone anytime I need it. Like you and S4ndy, I'm no longer needing to rush to reduce - if at all. 1 mg forever doesn't sound that bad after 7 years. I especially agree with your "yoyo" comment. In the early years the one rheumy in particular did me more harm than good with the yoyo routine. Best wishes, Raven

[fmkkm]

Thanks Raven, sounds like a lot of us are in the same situation. I did just find a rheumatologist who specializes in vasculitis type autoimmune diseases. I may make an appointment for a 2nd opinion just to see where he sits before canning the PA. There may be a lot of us right now just needing a little pred under 5mg to live comfortably, they hand out drugs to us oldies like candy but a little pred seems to get their knickers in a wad, I just don’t get it!!

[Blondiblue in reply to fmkkm]

Indeed!

[Raven1955]

I had my appointment with rheumy #5 yesterday and we spent 30-40 minutes having a nice conversation. Where was she 7 years ago when I first came down with PMR? She had an almost perfect (in my opinion) understanding of PMR and dealing with side effects and pred reduction. She completely subscribed to the DSNS reducing system and numerous times commented that there's no rushing when dealing with PMR. At the end I found out that she'd actually retired 4 years ago at age 68 but had been persuaded to come to the clinic an hour from here to fill in for a couple years because they were short of rheumies. 4 years later she's retiring again at the end of this year at age 72. And once again the clinic will be without a rheumy on staff. She gave me a prescription good for all of 2024 and said I had an excellent understanding of how to deal with it, not to see a rheumy once the clinic did get one because I could handle it. She sent a note to my GP telling her to write any further prednisone prescriptions for me if needed beyond 2024, as she was comfortable that I was fully capable of handling any dosage changes. At the end she made a couple saucy comments about 2 of the previous rheumies being "rather dumb" about PMR. Dang, I was ready to marry the lady!

[fmkkm in reply to Raven1955]

I love that story. I do get better help from the older doctors. This young PA I go to just looks at me with glassed over eyes when I try to explain the life changing stress I have been having and how it is basically preventing me from decreasing pred. I’m looking forward to a better year, I have a new plan!

[PMRpro Ambassador in reply to Raven1955]

If you ever see her again - tell her I love her!!!!!