Rheumy leaving practice, yet another search

[Mstiles]

Hello all,

Well my third and best rheumy so far is leaving the practice at the beginning of next month. Like many on here I’ve had bad experiences with doctors, some may remember I was “fired” by my first one when I didn’t taper as he demanded, etc. the second one also pushed a fast taper, etc.

With all the covid stress etc I’m not looking forward to doing another search for a rheumy. I have a video appointment with my current one in 2weeks. We had a misunderstanding at my last appointment in January, she thought I was at 9 mg, when I was still at 10 because of major stress having to do with my best friend on life support from an accident, and major family stress. (Son with PTSD). She wanted me to be down to 5. by our next appointment in May.

She finally agreed that I could slow the taper to 1mg every six weeks. Which I started in February. However by the time I see her in two weeks I’ll only have reduced to 8mg.

A few weeks ago I asked her to refill my pred prescription early because of the stress of the covid situation, one less thing to worry about, but she refused, saying pred isn’t used to treat covid so no shortages to worry about. My son who I live with is an essential worker and so is out in the community so he can’t stay home to lesson contacts.

There is one other rheumatologist in the practice who has horrible reviews, “arrogant, doesn’t listen.....”. I know it’s only a few opinions, but...

Could my GP handle my case until I find someone? I was diagnosed with PMR/GCA in January 2018 and put on 40mg of pred. Doing OK now except for some pain in sacral joints and elbows. Rheumy has suggested I see GP for an x-ray for this but because of the Covid I haven’t done so yet. I’m getting blood work done next week.

I don’t really have energy for finding another doc right now under the circumstances. I don’t want to be stuck with another rheumy who causes as much, if not more stress than GCA/PMR. Hopefully she will refill my pred before she leaves to give me some time.

She was great during the past year as she really listened and let me taper according to symptoms and as I was able. I don’t know what happened but she was stricter at our last appointment, wanting a faster taper, something seemed to have changed with her.

I just know I’m dreading going through the process all over again of looking for a new rheumatologist, the way things are now.

I’m in the US, things are a mess here, enough said.

[Yellowbluebell]

Hi, sorry to hear all your troubles with rheumys. In the uk we are normally referred to a rheumy if we have gca but not if we have pmr. Obviously the risks associated with gca mean that most gp's dont gave the experience to deal with it. I am not sure if your normal doctor could deal with you now you are on a lower dose of pred. I have pmr so dont have much experience with gca. Dorsetlady is our expert on gca and she will no doubt be along in the morning to help advise you along with others who have gca, its bedtime here in the uk now. Hold on till the morning and dont worry. YBB

[York54 in reply to Yellowbluebell]

I was referred to a rheumy with PMR.

[Hidden in reply to York54]

They tend to refer so-called atypical PMR....which based on my experience here and personally means they reduced too fast and messed it up. 😉

[Hidden]

On a night time trek to the bathroom....my view is a good gp is better than a poor rheumy. A discussion with your gp with tapering choices and American Rheumatology Ass overview might give you both the confidence to manage it. Worth thinking about.

rheumatology.org/I-Am-A/Pat...

healthunlocked.com/pmrgcauk...

[Mstiles in reply to Hidden]

Thank you for the links.

I’ve used Dorset Lady’s plan successfully. When I started reducing from 10. to 9 I ran into trouble, I had a lot of stress in my life, and so I slowed to a 6 week taper, reducing .5 mg first three weeks, and then the other 5. the last three weeks. I’m at 8.5 now and so far so good.

I may try the DSNS taper as I get down a bit farther but I’m confused reading the posted link, I can’t seem to under stand how it works! What happens the rest of the week? (I.e. “ one day new dose, two days old dose, etc”)... how about the other 4 days?

I swear I think I’m losing it! I’ve read the plan several times and still can’t figure it out.

[SheffieldJane in reply to Mstiles]

Is the old dose for the rest of the week? Then the following week the new dose for 2 days then the old dose for the remaining days. Then 3 days new dose and the remainder old dose. Then 4 days new dose and the remainder old dose . Until the whole week is the new dose every day and you are down? Listen to your body and if all is well drop again. Starting one day new dose and 6 days old dose.

Sorry if I have made things worse ( early hours).

[PMRpro Ambassador]

In the UK PMR would usually be managed by a GP unless there was a good reason not to. In the US it seems to depend on the GP - many seem to like to wriggle out of the responsibility, even when it is a very long drive to a specialist. Many GCA patients would also be under ongoing care with a GP although not discharged from hospital care - but checkups are often a movable feast and it may be a year between appointments when things go wrong.

I'd bet what changed was she knew she was going to leave and didn't want her replacement judging her as not having got your pred dose lower.

Your best start is with your GP who presumably knows your situation rather better? Are they sympathetic and understanding?

[Mstiles in reply to PMRpro]

Yes I had the feeling some other factor caused a change in her, maybe she got pressure to have me go faster.

I’ll see what my GP says. I need to see her anyway for an X-ray for ongoing sacral joint pain. It’s been a bit difficult to get seen with the Covid issues.

I’ve only seen the GP once as a new patient in January, but had email contact as she wanted me to start a statin because of high cholesterol, but she didn’t pressure me once I explained my reasons for declining.

Since I’m not on a high dose, 8.5, and the taper of 1mg every 6 weeks, (.5 every three weeks) seems to be working, any suggestions on how to approach her about seeing her instead of another rheumatologist for my pred? Do really need another rheumatologist at this point? I guess GP’s would rather have GCA patients managed by one.

Maybe because of the tricky stage around 7. mg when you get to the point where the adrenals start to work again, having a rheumy manage would be better?

[PMRpro Ambassador in reply to Mstiles]

Nothing a rheumy can do about that stage - they do have access to more drugs when a patient gets stuck at higher doses and it is the PMR or GCA that is causing the trouble. Not that I'm entirely convinced about anything bar tocilizumab and that isn't appropriate at this dose.

But the return of adrenal function below about 7mg is something only time, patience and slow reduction can achieve, There is nothing otherwise - even if the internet makes such claims, and even if you use one of the other drugs to reduce the pred dose, the adrenal factor is unchanged.

I would just ask the new one nicely if they are willing to supervise and supply the pred. Tell them you are aware of the possible problems and know when and where to ask for help. I don't think it is unfair to say you would like to keep it simple for the time being at least.

[Mstiles in reply to PMRpro]

Thank you for the right words. I struggle with losing focus at stressful times with doctors.

[Mstiles in reply to PMRpro]

One more question at this point. This rheumy has said no need to worry about adrenals until you get to 5 or below, seems some encounter adrenal issues before that point. Isn’t the rheumy the one who orders the adrenal function test? Or refer you to an endocrinologist? Or do I get that appointment myself?

[PMRpro Ambassador in reply to Mstiles]

Depends on your system - in the UK a GP could also refer you to an endocrinologist. However, few would do a synacthen test before 5mg, other wait to 3mg to get more meaningful results.

What may happen is that if you don't absorb a high proportion of the oral dose you take you effectively get down to 5mg effective dose long before that is your oral dose. A lot of doctors don't contribute to that theory. If the fatigue is increasing at higher doses it is a sign to slow down probably. Higher doses of pred do give some people a boost - not all though by any means!

[Mstiles in reply to PMRpro]

Thank you for your knowledge and response PMRpro.

I have a video appointment tomorrow my rheumatologist, the last appointment before she leaves the practice next week. I’m pretty anxious about it. I need a pred refill and am still having sacral joint pain and now some pain in my elbows when I’m lying down and holding up a book for any length of time, on both sides. My send rate has gone up to the lower limit of the range but she says it’s fine. CRP still OK. I haven’t yet seen my GP for an X-ray, it’s been difficult with all that’s going on. I’m currently in a taper from 8.5 to 8.

I’m hoping she gives me a 3 month pred refill to cover me until I can see my GP or possibly find another rheumy if necessary.

[PMRpro Ambassador in reply to Mstiles]

It isn't fine if it is rising for you - a person doesn't have a range of the right level for them. Normal range is the range of readings for 95% of a large healthy population, usually 10,000 is the base. Not for 1 person 95% of the time.

[SheffieldJane]

You really have had a uniquely negative experience with Rheumatologists. I have never been micromanaged in this way, and I would have responded badly, I am afraid. I would want to discuss this with my trusted GP. You are clearly on the gentle way down - which should be slow and paced from here. I was doing 0.5 monthly drops at your stage and still stalled at 7 mgs, where I stayed for a year, punctuated by 3 attempts to get down further. One day it just worked. I think DorsetLady has a record of her own personal taper, which is of course unique to her, but may help you. At this stage a Rheumatologist is only really needed for things going wrong and access to sophisticated tests like Ultrasound and MRI scans. It may be that you can do this stage with the the support of your Primary doctor alone? Have the discussion. I feel your weariness and lack of confidence in Rheumatologists.

[Mstiles in reply to SheffieldJane]

Yes it is so wearying to have the same problem again. So since I’m at a lower dose now, 8.5, going to 8 next, GP’s could handle it now? That would be so much easier and she is closer to me.

[bunnymom]

I'm in the US and see a rhuemy but my gp was doing fine when I switched.

[Mstiles in reply to bunnymom]

Did you switch to a rheumy for some reason?

[bunnymom in reply to Mstiles]

I thought he would better help me reduce my medication and have more basic info on living on steroids. I thought a specialist would have more to offer but he didn't really. I get more from this forum. My GP told me I'd be well in 2 years. Here I am 4 years later.

[Mstiles in reply to bunnymom]

At least he is still giving you you pred?

Yes thank god for this forum.

[bunnymom in reply to Mstiles]

I had neck issues that I had to sort out when I first had PMR so I wasn't reducing very well. Then my Mom quickly died of cancer so I had quite a bit going on. It was difficult to tell what pain was what. He did prod me to lower but at first he wasn't even convinced I had it. I go twice a year and he gives me refills.

[Mstiles in reply to bunnymom]

Yes sorting out what’s causing pain gets tiresome. Also tired of “the prodding”.

Glad you got it to work for you.

[mo3go7]

I'm in the US and my GP wants nothing to do with my PMR. He is an awesome GP, but he thinks a rheumatologist should handle my PMR. He doesn't even ask me how I am doing with it on my regular check ups he requires because I take blood pressure meds which started at the same time as PMR. I've seen 4 different rheumatologists & would love to find a different one, but there is a real shortage here in the US. I drive a distance to a bigger city to see my current one.

[Mstiles in reply to mo3go7]

You’re one rheumatologist ahead of me! It is worth a drive if you are able to find a good one.

[Jackoh]

Really feel for you I too would find it very difficult to have such negative responses and not a “ working together “ with my rheumatologist. Personally I would be inclined to stick with your GP but obviously the ultimate decision has to be yours.

[Mstiles in reply to Jackoh]

I’ll see what my GP says. I’ve only seen her once as a new patient but she seemed to listen.

[nuigini]

I can sympathize with your situation but not sure if I can offer any constructive advice, except to try and work this out with your GP.

I'm in Canada and did not get referred to a rheumy until 5 years into PMR and she immediately tried to pressure me to get off prednisone. We have agreed to disagree for now. However, my medication continues to be prescribed by my GP and he basically asks what dose I'm on when I need a renewal and gives me a prescription for three months.

[Mstiles in reply to nuigini]

That sounds ideal!