2nd visit with Rheumy confusing: I attended my 2nd... - PMRGCAuk

PMRGCAuk
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2nd visit with Rheumy confusing

PMRCanada
PMRCanada

I attended my 2nd visit with my Rheum this week, armed with noted and a list of questions. It was a confusing and somewhat disturbing appointment for me. We discussed my history and pred doses thus far (May 1 - 20mg, May 15 - 15mg, June 6 - 12.5mg, June 14 flair and CRP up and back up to 15mg where I stayed and am now).

She said I had been at 15mg for too long now and set a very specific taper schedule for me (12.5mg for one month, 10mg for a month, and then she would consider reducing by 1mg). I challenged her about why I had a flare in the first place (was the taper too fast, to much of a drop from 15 down to 12.5, what about my weight being a factor, what about ongoing pre-existing chronic knee conditions that have yet to be treated). She outright refused to let me drop by 1mg from 15 down to 14, saying that I may not even have PMR. When I asked her what I did have then she mentioned seronegative arthritis?? I reminded her that my blood tests for RA were both negative and she replied that some people with RA don't have the antibody in their blood. I mentioned I have never had finger, hand, wrist feet or ankle problems or pain, and reminded her that I had classic PMR stiffness and pain (bilateral) in shoulders, neck, glutes, quads, hamstrings etc, and ongoing pain in my knees (MRI has shown chronic past injury and meniscal tears of all types, ACL tear, etc). She said PMR does NOT effect your knees! She examined me and asked about my hands, feet and ankles and I told her once more they are not painful or a concern. I am more concerned with having my diagnosis changed now that I am already on pred, and with having to wrap my head around a new possible condition. She smiled and said well having RA isn't as bad as PMR, because PMR lingers and Methotrexate could help me taper the pred faster.

When examining my knees she mentioned the extra fluid in my right knee and mentioned she would like to extract some with a needle and send it away to be examined, and if there were certain cells present it would determine if the knee issues where mechanical or rheumatic. When I asked her if she read the MRI's sent to her, she said no, so I refused mentioning that I am meeting with an ortho surgeon in August and I will ask him about it. She made me right down what she wanted me to ask him to test for if he extracted fluid. She also told me that my surgeon will want me to be on 5mgs of pred or lower when I have procedures/surgery done to reduce chance of infection and casually mentioned that I will be at that level by the time if have any procedures done (not sure how she knows how to predict my taper AND the surgeons schedule/availability).

She did agree to send me for a bone density scan to get a baseline, and advised me to see my optometrist as usual to keep an eye out for cataracts which is a side effect of the pred. She also acknowledged some of the side effects I am experiencing (mood swings) and how this can affect relationships and the resulting stress. She was ok with my not starting my next taper down to 12.5 until after July 28 (our wedding reception and housewarming).

My gut is telling me that I am being set up for failure with my tapering given her schedule. I already flared going from 15 down to 12.5 so I'm nervous about that. I briefly spoke to my gp before my appt with the rheumy he referred me to, and feel his initial diagnosis of my PMR is correct (my gp has a colleague in his practice that has PMR). My gp is also very easy to talk to and very supportive. I am considering asking to see a different rheumy and being under his care until then.

Has anyone heard about diagnosing a rheumatic condition from taking fluid from an inflamed part of the body (such as the knee)?

Sorry for the length, and thanks for reading. I find this forum so helpful! I trust your insight and wisdom and look forward to your response.

43 Replies
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PMRpro
PMRproAmbassador

arthritis-health.com/treatm...

She isn't entirely correct about you needing to be down to 5mg or less for surgery - that depends on the orthopaedic surgeon and I know people who've had hip and knee replacements while on 10mg. There are people who CAN'T get off pred or are emergencies - and still require surgery. So they have to get on with it.

"She smiled and said well having RA isn't as bad as PMR, because PMR lingers and Methotrexate could help me taper the pred faster."

She thinks does she? Glad she isn't my rheumy is all I can say!

Oh dear, why do we have to come out of Rheumy appointments feeling worse than when we went in.....this has happened to me several times......If it were me I would see if I could be managed by my GP.......and he can always consult his collegeague about PMR maybe......I

My sister has RA.......it isn't curable.....mostly manageble.....think she is confused!😕

good luck....

I'm sorry to hear you have to deal with this. My cousin has RA. No way would I ever change places with her. Fancy hoping a patient has RA rather than PMR just so they get off pred faster! 😲🙄😒

Your GP sounds so much better. Every time I read posts like this, and there are far too many people facing this kind of attitude, I thank my lucky stars I've never seen a rheumatologist!

PMRCanada
PMRCanada
in reply to HeronNS

Makes me wonder if this happens more often with Rheumys, or with other specialists?? Finding out as I go along this journey that I am the expert in my own experience/body, and I'm going to put my health and healing a priority (even if the medical professionals don't).

PMR doesn't affect knees? I really would like some medics to get PMR so they can learn what it is really like, and that they would listen to the patients! What part of Polymyalgia RHEUMATICA does she not consider? PMR affects muscles and joints. My knees were badly affected by PMR and still become painful when I have a flare, so I talk from experience.

She is correct in saying that your orthopaedic surgeon will want you at a lower dose if you have surgery. Although PMRPro says she knows people having surgery on 10mg most surgeons would like you lower for a knee as they are paranoid about infection and slowness of healing at higher dosages. Particularly as everyone is now worried silly about anti biotics not working. The dosage they want you down to also depends on the actual surgery you are having. Some surgeries they will do at any level of pred. I was 15mg for one three years ago.

She does sound better than some rheumies, I suppose we cannot expect them to be perfect.

Well, it is possible to have both RA and PMR at the same time, they are not mutually exclusive. It does feel like she is trying to shoehorn her RA theory into a picture that doesn’t fit though. Is there any way you can quietly push this Rheumy into the long grass and go with the GP as many do quite legitimately? It always beats me how some docs just wont listen and would rather send people on a white knuckle ride of reductions risking flares, for the sake of what often amounts to a few mg per month.

Dr google says samples of joint fluid are taken as part of the diagnostic workup to determine a number of rheumatic diseases.

Dr. Google huh!? I’m always happy when I stumble on the Cleveland Clinic site :)

Just want to add my experience here. 4 weeks ago I had a hip replacement whilst on 11mgs. Pred. The anaesthetist was not fazed at all- he gave me a steroid infusion after the op. presumably to accommodate the shock my body was in? A year ago, a different surgeon had told me the pred. made me a risk and refused to operate( I was also too overweight for his liking).

I was willing to take the risk as I was in so much pain and found a surgeon who could see this and weigh up the pros and cons.

The message here is not all surgeons worry about the pred. My rheumy( Rod Hughes) has told me that the levels of oral pred. we are on do not present a significant risk for operations.

I am making a good recovery!

PMRpro
PMRproAmbassador
in reply to suzy1959

How are you doing? How has it been?

suzy1959
suzy1959
in reply to PMRpro

It’s going well I think. The biggest problem is that my opposite knee is really painful the more I am now walking. The physio has put me back on 2 crutches to give some relief to the knee, and a few exercises which has helped. I will get an x-Ray of it next week, just in case falling on it 8 weeks ago has caused extra problems.I am not getting much pain at all in my hip! I am frustrated at not being able to drive- only another 2 weeks! It’s my daughter’s wedding in 5 weeks time and a little part of me would love to be able to dance, but, given both my knees, that may not be possible.😔

PMRpro
PMRproAmbassador
in reply to suzy1959

So pleased! You have had such a fight to get to this stage.

So pleased you are released from your hip pain and on the road to recovery. I am hip op plus 8 weeks, carried out on 5mg Pred per day at surgeons request. Like you my other side is getting worse as I make more demands on it. In fact my operated hip is now carrying my Unoperated hip. I am back on 2 crutches, more rest etc and waiting to see if NHS will fund a second hip operation on same referral. I'm so disappointed that I am looking to buy a mobility scooter! At least I can now drive the automatic car, but not my own classic sports car, and I can go in the pool, tho not much swimming goes on just floating around.....feeling released.

All the best for your recovery.

Sorry you had such a bad experience!

So many posts on here about rheumys who don’t listen, have rigid taper schedules, and only go by blood tests and either discount symptoms or put everything down to prednisone side effects!

I’m on my second rheumy just like this, (looking for another). My first one “fired” me from his practice because I didn’t follow his taper schedule.

The stress of having to fight with your doctor surely doesn’t help us heal!

PMRCanada
PMRCanada
in reply to Mstiles

Exactly Mstiles! She has set out such a rigid tapering schedule, I fear having another flare just getting down from 15 to 12.5. My gut tells me to get my prescription filled and ask for half 2.5mg pills and half 1mg pills so I have some flexibility with my taper moving forward. I'd still like to go from 15 down to 14. When I suggested this taper she laughed and said it was "silly", and would take far too long to reduce that way???

I will also speak with my gp and debrief my recent appointment with him to discuss a plan moving forward with a possible referral to a new rheumy. I will also wait to see what the surgeon has to say about me being on pred and also having treatment for my knees (whether that's all our surgery or laparscopy). I know I have mechanical knee issues that require treatment that are chronic and historical in nature, but still can't believe that in some ways PMR does present in the knees (as in my case), and it seems as though my knee issues complicate things on my PMR journey (and vice versa).

Like some who have responded to my post, I am curious how we will make out with our impending knee complications moving forward. I do know that I'm not interested in trying Methotrexate this soon in my journey, I've only been on pred for 11 weeks, a bit early to been adding new medications to my regime.

Thanks to each and every one of your for your response! Wish I could take you all to my appointments, but I am confident that I can advocate for myself and am willing to challenge/fight for my best healing options if need be.

HeronNS
HeronNS
in reply to PMRCanada

You can try reducing by 1 mg every ten days or so, instead of 2.5 all in one go for one month. It might work, and it's just as fast as the doctor wants with less of a jolt to your system. The next step down, to 10, will probably take longer. I hope you have or can get 1 mg tablets? I should say that my doctor told me to reduce by 1 mg per week until I felt pain return. I got to 10 from 15 in five weeks this way, but 9 was a step too far and I had to go back to 10, and after that used the dead slow nearly stop method.

PMRpro
PMRproAmbassador
in reply to PMRCanada

"she laughed and said it was "silly", and would take far too long to reduce that way"

Since the idea is to find "your" dose - how does she know in advance what that is going to be? They do seem to have some very strange ideas about how PMR and pred management actually work!!!

Heron's doctor's idea of 1mg per week at first seems sensible enough to me.

Longtimer
Longtimer
in reply to PMRpro

Who on earth is training this reumies and putting these unworkable ideas in their heads??

PMRpro
PMRproAmbassador
in reply to Longtimer

I suspect they glance at the suggested reductions you find in the literature and don't read them in detail - so they don't see there is always a note that it may need to be adjusted for individuals nor can the duration be foreseen. And then take it at face value - if the experts say this it must be OK. Some will be better doctors and realise that for themselves as they take an interest in the patients they manage. Many patients are just turfed out and left to their own devices or looked after by a good or bad GP - and I suspect a lot of people just give up in disgust having been failed by these doctors who tell them then it can't be PMR as it has gone on too long.

So which is worse? Not being managed at all or allowed to stay on the drug that allows a decent quality of life?

Longtimer
Longtimer
in reply to PMRpro

Quite.....

Rugger
Rugger
in reply to PMRCanada

I would stick with the GP, the Ortho surgeon and this forum and forget about a rheumy!

I went from 15 to 13. 75 then 12.5 to 11.25 then to 10mg. Achieved by using 5mg 2.5mg and 1mg tablets and a sharp knife to split the 2.5mg tab. I did this because I started to feel "not right" going from 15 to 12.5mg, not a flare but my body not happy. Because it is accepted that dose reductions of 10% or less are the ideal way to reduce (especially at lower doses) and my body was giving me warning signals I just did it. My Rheumy literally laughed at me, my pharmacological knowledge disputed it but my body said thank you and as a result my taper has been unproblematic and I've never flared. I know how hard it is dealing with these people but it's your body and you're the one who has to cope on a daily basis. They won't give you another thought once you've left the consulting room!! I really am very unconfrontational but I've learned to stand my ground and if what I'm doing works there's not a lot they can do about it. I'm now on 8.5mg using Dorset Lady's method. Good luck.

How long did it take you to go from 15 down to 10 with the method you mentioned (how much time between each taper)? So glad for you that your taper has been uneventful, something we all hope for. Wishing you continued smooth tapering.

My Rheumy sounds as if she could be a sister to yours (I’m in NZ)

She now thinks I have zero negative arthritis and not PMR as I have a few peripheral joints involved. She had added leflunomide and hydrxychloriqune to the mix and wants me tapering from 20 to 10 in 2.5mg steps. Will see how it goes as I now have possible steroid muscle weaknesses- time will tell and all the best with your journey - Jan

My Rhuemy also wants me to reduce by 2.5 in two stages to bring me down from 15 to 10 mgs by the end of August when I next see him. Reading the warnings on this site about reducing too quickly I am tapering by 1mg at a time. My body my decision.

Janicep
Janicep
in reply to ChrisMcT

Are you waiting 2 was between reductions or more?

Janicep
Janicep
in reply to ChrisMcT

That should read 2 weeks

ChrisMcT
ChrisMcT
in reply to Janicep

Well I'm going to see, if after a week I feel fine I will reduce again, if not I'll wait longer, he did say that if I was having problems stay on the dose I'm most comfortable at till he sees me, so although 10mgs is his target, living my life as pain free as possible is mine. xx

Longtimer
Longtimer
in reply to ChrisMcT

I have fibbed to mine in the past......but now dealing with GP.....any pressure from her.....will do the same.......my body, my pain.

Hi there,

I have a problem with my shoulder which has a huge bursa filled with fluid. Had it drained once and it has filled up again. Consultant said he wouldn’t drain it again as the rheumatologist would want to take a sample of the fluid to send to the lab. I asked what for and he said one of the things was RA.

Liz.

PMRCanada
PMRCanada
in reply to polymy

Thank you for this info polymy. The first I heard of such a procedure was at the appointment and wanted some time to process it before I made a decision. She noted that she plans to drain some fluid from my knee at my next appointment in Sept. If it will help to determine a diagnosis, it will be worth it, as so many of the rheumatic conditions/diseases seem to be complex to determine, especially with overlapping symptoms, markers that may or not be accurate, etc.

I have similar issue with knee that you have. An old sport injury many years ago, torn ACL and reconstruction surgery that replaced ACL but they had to remove 40-50% of meniscus. Now because of time or PMR knee hurts. Rheumi sent me to orthopedic surgeon who remanded replacement knee, but I refused and asked for rehabilitation. I have been going on for rehabilitation since January. After about a month or so, pain was gone.. Now I am working on rebuilding muscles around the knee in hope that it will become more stable to the point that I delay knee replacement indefinitely or at least as long as I can.

Just a note - taking "water" from the knee is very simple procedure and takes minutes. Usually it results with immediate reduction of pain. Have done it several times. Dr that did it say that knee is "crying" ...

About pred reduction... you already know what happens if you rush... so don't. If I were you, I would get 1mg pills and create my own reduction schedule. Above 10, one can usually be a bit more agressive, so 1mg every 2 weeks might work. Slow down when you get to 10. Usual rule for reduction is "no more then 10%" in each step, so for 15mg dose, that would be max 1.5mg; for 12.5mg it is 1.25 ( or rounded to 1mg... below 10 mg one should consider either very slow reduction and 0.5mg steps.

PMRCanada
PMRCanada
in reply to nickm001

I really appreciate your reply nickm001. Always so helpful to connect with folks over common ground. Your comments about "taking water" put my mind at ease. Yes, it makes sense to follow my gut and more slowly taper so I don't flare once more.

Wishing you all the best with your knee recovery moving forward. Both of mine have so many chronic issues it will be interesting to see what the surgeon says the end of next month.

Onwards and upwards.

I contracted PMA 19 months ago since when I have seen three different rheumys (apparently they don't stay long) I was told I was completely 'cured' 13 months ago and just had to reduce by 1mg a month until I was back to normal. 13 months later I have been diagnosed with PMR, GCA, RA, Sjogrens and after the high doses of steroids I have been on I now have insulin dependant diabetes. I take 26 different medications including methotrexate and hydroxychoroquin. My new rheumy has ordered CT scans and yet more and more blood tests but at least she is being thorough. Oh yes, and she phoned yesterday to say my latest blood test shows minimal white cell count and I have to come of methotrexate immediately, I must not go to work, or shopping or see my grandchildren or anyone with a cold etc. until further notice. Nightmare stuff.

Perhaps the answer is that nobody really knows how to sort our problems out?

PMRCanada
PMRCanada
in reply to Daisyroo

Wow, shocking Daisyroo!

3 rheumys in in 19 months. I certainly hope this current one meets your needs, sounds like she is thorough if nothing else. Must be so confusing and scary. Hope things go smoother moving forward and they manage to sort things out so you can heal.

Longtimer
Longtimer
in reply to Daisyroo

Good luck and keep us posted....nothing shocks me on here anymore.....sadly.....

PMRpro
PMRproAmbassador
in reply to Daisyroo

I think you are probably close to the truth! I believe they are too impatient - and badly informed. We are never "cured" of PMR/GCA - at best we are in remission. There is the potential for the underlying autoimmune part of the disorder to reignite at any point.

Is she surprised your white count is low? Because I'm not. Polypharmacy is the source of many many problems, leads to large numbers of people requiring admission to hospital and can even cost lives. But still they dish out drug after drug without considering that this patient is already on a lot of different medications - and there are likely to be interactions and problems as a result. No testing is done of such mixes - so they cannot be sure of anything.

Have you considered getting a second opinion by another Rheumatologist and have your GP do some tests? It seems you do not have trust with your doctor’s diagnosis. This is when a second opinion could be valuable.

What should said about RA being not so bad is just wrong.

I hope you are able to find peace with your health diagnoses.

Trust is a big part of the healing and a huge part of tapering. This site has more trust for me than unfortunately my Rheumy I have seen 2 now. Sad to say. They are very smart.. with other things I am sure.. but PMR is still not consistently treated in their scope in my opinion. For example.. the knees being stiff and painful is a symptom for some of us. The Docs say No!! They are wrong here.

I would like you to go with who you are comfortable with. Sounds like your GP.. and keep on this site as you know there are many smart people here. With first hand experience in tapering. Best of luck to you!!!

If you haven't been given this link yet, here is the taper that led me to this site earlier this year:

healthunlocked.com/pmrgcauk...

I have had PMR for a little over 2 years. My fist taper the doctor advised was reducing one mg every 2 weeks after getting down to 5 mg fairly quickly, I'm sure that is fine for some people but I had a relapse 6 weeks later.

This year I told my rheumy I was doing the taper on the link above. (I didn't ask, I have been through hell, like so many on this site and my previous passivity with doctors is history) He didn't fire me thankfully and so far so good. I am about 6 weeks since last dose and am not experiencing symptoms yet. I know the PMR or predinose or whatever, has impacted my knees though, so that pain is back full on.

I have had similar knee problems as you have. I will be getting both knees replaced as soon as I can, it's a struggle because I'm only 51, but stage 4 deterioration is stage 4, darn it. I digress, if one of the problems they will test your knee fluid for is gout crystals that would be good. I believe my roller coaster of medications prior to PMR diagnosis led to a gout episode, which is unbelievably painful. So it would be good to have it checked so that you know if any crystals are present, it doesn't always cause symptoms at low levels, but you would know you are at risk.

I sincerely hope things improve with your doctor, it's like putting salt on a wound to struggle with your 'care providers.'

Hidden
Hidden

Dear PMRCanada, I am just now reading this post... I was not feeling great 12 days ago and missed it, sorry. WOW! I am so impressed at the way you handled your Rheumy! I have not read any of the other comments, but I am sure the site experts have addressed your confusion and predicament! I am in awe at your overall organisation, knowledge and memory of your condition, symptoms and history; and your succinct responses to the Rheumy! WOW! I tend to get tongue tied and flustered!!!! Good on you!!!!! ....and YES , I'd ask for different Rheumy!

I would just like to add I had my hip replaced whilst on 20mg Predictive. I asked my surgeon about it and he said that they operate on people all the time on high doses in emergencies. I was fine and healed quickly

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