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My new drug cocktail

Having had ongoing issues with painful swollen knees I have added leflunomide to my prednisolone and hydroxychloroquine. My rheumy still believes I have PMR (diagnosed March 2016) but believes something else is at play with my knees as she said she hasn’t seen it present in large joints in the way mine is! Knees were very debilitating and were having the greatest impact on daily life since original pre diagnosis pain. I realised I had to try something else hence the new cocktail. Steroid injections and fluid drained from both knees two weeks ago and leflunomide started one week ago. So far so good.

Having just had dinner with a friend with Addison’s disease we compared notes. Why are we pressured to reduce our steroids and strongly encouraged to take steroid sparers when others are on steroids for life? She takes 22mg of cortisol (or cortisone, are they the same??) daily and will do for life.

I have been mulling over my new drugs and have just started to think why don’t I just take a higher dose of prednisolone until my knees settle? In the beginning it was my shoulders which were crippling but not swollen and now they are completely normal. I’m just hoping my knees will be similar. Fingers and everything crossed!!

Any thoughts from others who are also on a cocktail of drugs? I’m currently tapering to 10mg.

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I did exactly what you are contemplating, after I had taken Calichew. prescribed, as just in case.........result too much calcium and result Pseudo Gout in right knee. Fluid drained and it took quite a while to settle down.

So I look at everything when I was offered a 'steroid sparing agent', I asked, will it cure, of course the answer was no, there is no cure or cause at present. I then counted the additional side effects and said no thank you, I don't see the point of adding side effects to the ones that come with pred. . Much consternation, but as I said 'my body, my decision'. I will stick with pred and if I run into any problems we will deal with them if and when they arise.

Now I am not advocating you do the same, as it is a very personal decision - you know your body and situation and after listening and thinking you make your own mind up and explain why.

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Hi jinsac, how did they work out that too much calcium caused the knee pain? I’ve had no suggestions what’s causing my knees to swell. No OA from X-ray. Rheumy used ultra sound and could see large pockets of inflammation but no explanation as to why it’s there other than ‘inflammation ‘ and lots of white blood cells in the fluid.

The knee pain drove me to accepting other drugs and I’ll stick for a few more weeks to see how it goes. If knees swell again despite new drugs I’ll probably stop them.

I think I’m realising that I’m so reluctant to increase oral steroid because it has been subconsciously drummed into me that being on a high dose of steroids is ‘bad’

As PMRpro often says you have to be on the right dose for you. My new rheumy in Edinburgh is a lovely empathetic woman and I’m delighted I’ve transferred from the more grumpy man 😁. She listens to me and doesn’t dismiss my many theories. She’s happy to explore options hence I haven’t gone straight to methotrexate. I have unusual liver functions so I didn’t see the point in taking a drug that would definitely make them worse. I appreciate leflunomide has to be monitored but I believe it’s lesser than Mtx, or am I wrong??

I suppose I’m trying out the other drugs as it’s suggested it might be other inflammatory factors in my knees not just PMR. I’ve no idea how they will ever work out what it is but in the meantime the pressure is always there to reduce steroids and try the sparers.

Thanks for your reply.

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Have they looked at the fluid? If it is calcium causing the problem they would find crystals in it. It's how they differentiate between gout and psuedogout.

arthritis.org/about-arthrit...

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Yes the fluid was examined and results came back with xxx white blood cell count, which I believe means ‘very inflamed’ Nothing more diagnostic.

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I'm writing late. Two thoughts. When I took leflunomide for RA, I got seriously full blown autoimmune hepatitis--it is known to cause liver problems, as is mtx. Has anyone suggested you might have RA?

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They don’t believe I have RA mainly from blood test results. I’m not sure they can ever be conclusive though. I am negative for the RA factor and have been both times I have been tested over the last three years. I think I then just fall into the ‘other inflammatory arthritis’ category! I definitely respond to prednisolone but it’s this continuous pressure to be reducing that ends up with the other drugs being introduced.

I’m getting my first blood tests done next week so we will see what effect two weeks on leflunomide has done to my liver and take it from there.

Thanks for your input.

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Hi Lochy, I too am under the WG rheumatologists. Certainly my nice young man (I think Ive identified your grumpy old man) is keen to have me on the lowest possible dose of steroids - currently 8 and 8.5 mg. I have been on leflunomide for years for arthritis, which I had long before PMR/GCA. I am not entirely sure if it spares the steroids, but for me, it has kept the inflammation well damped down. I found methotrexate difficult to take and it was totally ineffective in my case, so was one of the first WG patients to be given leflunomide. It is not easy to cope with some of the side effects, but I have reached an accomodation with it and am happy to keep taking it. Hope this helps a bit.

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PS My arthritis has been active for 25 years now and I am still serum negative! Inflammatory arthritis it is 😃

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Ha! I think there are a couple of grumpy old men lurking there!

What side effects did you suffer and how quickly did they appear? I know we’re all different. Thanks for your comments.

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Lochy, 2 major side effectts for me - loss of feeling in the tips of my toes and less so in my fingers, and diarrhoea. The loss of feeling creeps up on you and is not reversible - mine is not too bad and is a price worth paying for the relief. The diarrhoea is a whole different ball game - it started almost immediately and still goes on. For me, a main meal is the trigger and the urge in the early days was so bad that I had to leave the table before finishing eating. That eased off eventually and usually, the cocodamol I take for pain relief keeps things in balance. There is still an element of " when you gotta go, you gotta go" but I have become aware of what I eat when I am out and about. Incidentally I was recently reading a paper on a leflunamide trial which showed that a high number of participants were not able to complete the trial because of the diarrhoea - so it is not just me!

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Oh dear doesn’t sound great. I know hydroxychloroquine has caused a difference in bowel habit but it’s occasional and since I started leflunomide that’s not really changed. Hopefully it doesn’t get any worse. Totally unaware of possibility of loss of sensation in fingers/toes. That sounds worrying.

As they don’t believe I have RA yet I do wonder if it’s worth experimenting with these steroid sparers?? As I say I’ll give it a few weeks and see how my knees feel. Is leflunomide one of the drugs that builds up over a few months before you get benefits??

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I can't honestly remember. What I can say though is that we have always tracked effectiveness by tracking the ESR. Mine has always been high and even with the steroids hovers around 29. I think I might have been around 85 when I started Leflunomide and I think it steadily dropped before I started feeling the difference. My rheumy at the time always said that changes to the blood came first. The loss of sensation thing is on the patient leaflet. I am a church organist and find that the slight loss is not a problem to me at all. In fact I think it has not deteriorated for a good few years.

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Hi Lochy,l had a lot of swelling around my knees and ankles when on a higher dose of pred,my GP blamed it on the steroids.The swelling has gone down now that my dose is lower,but l do realise there are other reasons for your knee problem.l hope that you get some help that will give you some relief .

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Hi Grants, it’s never been suggested to me that higher doses of steroids might be responsible. What dose were you on when this was suggested. My knees appeared about 9 months ago and gradually got worse. I’ve been around 13 - 10 mg in that time. Perhaps I’m a candidate for sticking at a dose for several months, letting things settle first. Mind you that’s another of my theories, not one suggested by my doctors.

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My knees are the site of the worst pain at the moment. It is Osteoarthritis and one in particular is swollen. I see an Endocrinologist on Monday, I have underperforming Adrenal glands. My Rheumatologist offered steroid injections and Methotrexate. She did say the steroid injections would make coming off Prednisalone harder. I am on 5.5 after 3 years. I am waiting for the Endocrinologist input. I am stiffening up by the day but waiting, more than a little confused.

How did you find the knee treatment? The prospect does make me feel , well, weak at the knees. I am keen to avoid Methotrexate and other steroid sparers. I was in a zone of managing quite nicely before the doctors’ input, I must say. I think PMR is making the knee pain worse, it is equal in both knees which contradicts the x Rays.

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Hi Jane, just realised I replied to you in ‘reply’ to my own post! Can you see it??

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Got it Lochy and and replied ! X

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I'm blowed if I can see why steroid injections would make tapering harder. In fact, some rheumies, including one particulalry good PMR one, uses steroid injections for local relief instead of increasing the oral dose. And my personal experience is that once the local steroid has done its job, the oral dose manages the PMR better.

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Oh dear! She was having an off day. You are making us into challenging patients PMRPro and a good thing it is!

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:) If all I manage on here is to give someone confidence to ask a question about a silly comment/statement about PMR then I'm satisfied.

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Agreed. My surgeon said my oral dose wouldn’t likely be impacted by the Medrol knee injections I get....something about the oral dose being processed in the body differently than an injection in a contained area. He did say that steroid injections in the knee can accelerate the deterioration of the cartilage (I have OA and many other organic knee injuries including meniscal and ACL tears, a large bakers cyst, etc). Lastly he did mention that I would not be having a steroid knee injection within 3 months of my knee replacement surgery. He also thought my OA advanced and my right knee worsened significantly from 6 months of uncheck inflammation prior to my PMR diagnosis (which first presented in my knees, and threw the Dr off).

For now, the 2 knee injections I’ve had, along with my pred dose, is affording me great pain relief and essentially “a life”. I’ve been able to continue to slowly taper my oral pred dose while having the injections, but think I’ll be at 9mg for awhile as the last drop took a few tries.

Hope you get things sorted out SJ. You deserve some relief for your ever increasing knee pain and swelling. Pain is a sign something is wrong, so I hope they listen to you and address it!

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In my experience steroid injections can be systemic for a very short period, but then they subside and you feel relief locally. Good luck getting some relief from your knee pain and an acceptable approach to the adrenals. I'm on the more bioidentical hydrocortisone in place of pred, due to adenral insufficiency.

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Does it feel different? I am dreading the Endocrinologist’s input. I just know it will be contradictory to the management of PMR. It is my belief that my Adrenal production will pick up given time and a fair wind.

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I feel a rush and get a red face for about 2 to 3 days after a local shot, not in my knees anymore after 2 replacements. Have had them in spine and for bursitis most recently and they always help pain. The adrenal issue is more complicated for me, since it appeared after 16 years on pred for autoimmune conditions other than PMR, and my rheumatologist is both trying to get me off pred (with hydrocortisone) and find a way to treat PMR not using DMARDS or biologics. I know the idea of adrenal insufficiency is scary, but ultimately if it is necessary most people can take a low dose than doesn't have real side effects. It is not the same as Addisons from other causes, as I understand it. Of course, that is when PMR is under control. I am sure you are frightened and worried, hope the endocrinologist is reassuring.

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Thanks for that. I am more worried about receiving contradictory advice. Specialists can think in silos.

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Let us know how your appointment goes. I can tell you more about hydrocortisone if it comes up for you. They do think in silos. If they are not being sheep!

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See my rock and a hard place thread. Thanks, or PM. X

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Your friend is on corticosteroids for life since her adrenal glands aren't functioning - it is a replacement therapy. I do see your point though! And while I'd like to be on less pred than I am at present - I'm far from sure I want to investigate the other steroid sparers besides methotrexate which I have tried and made me totally miserable and Actemra poses some complex problems for me. I feel reasonably good on 15mg despite a big flare at present - but will that last?

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What has been your lowest steroid dose? I know you’ve had PMR for a number of years. Do you get pressured to try the other sparers or are your doctors happy for you to increase your steroid dose as and when? I know you’ve tried methotrexate with horrible side effects and that your not in the UK system.

One thing I do realise is that there’s quite a lot of trial and error!

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I did get to 4mg for a few months, tried 3.5 but the fatigue was overwhelming and I went back to 5mg because I felt so much better at that. Then about 4 months later I had a small flare and went back to 7mg in the end which was fine for the PMR but then I realised my atrial fibrillation was getting worse - at 8mg the a/f was much better though still there and at 9mg it was gone altogether. Last September I had a real flare - the a/f had been much worse and then my thigh muscles were so sore I realised it was a flare. I've had to go back to 15mg to manage the a/f - after discussing it with my cardiologist. She says she can't offer anything more for the a/f without suppressing my BP a lot more - which isn't very practical! I hoped it would settle again but more than a few days at 14mg results in a/f episodes again.

I've been under my GP here for the last nearly 6 years - and she is rheumy-trained as well. She takes the attitude "you need what you need". The local regional head of rheumatology is a world name in PMR/GCA - but says he always learns something when he sees me! We have discussed leflunomide - which he doesn't rate particulalry highly though Prof Dasgupta does, and there are problems with me trying Actemra so we haven't yet considered applying for funding. I thought I'd leave it until we have a clearer idea what my healthcare arrangements are in view of Brexit - at present I have reciprocal care with an S1 EHIC card. That will go in the event of no deal.

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Tut-tut. You used the B word...

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I had to didn't I?

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Hi PMRpro,

I have had a pacemaker/defibrillator fitted for a/f. I had it fitted four years ago and have had no episodes of a/f since. Would that be a possibility for you?

Liz.

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For a/f? Presumably they did a total ablation first? The cardiologist I saw here originally 6 years ago said they like to keep ablation in reserve as it rarely works for very long. But we are 6 years on now - and it is a lot worse in tandem with the PMR. Maybe I should ask someone...

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I didn’t have ablation. I don’t know if that may have been because Ihave cardiomyopathy. My arteries are all clear so it is thought to be genetic. The PMR didn’t help anything. The A/F was becoming frequent so I was offered the pacemaker/ defibrillator. They were afraid that I might get V/F which of course can be fatal. Before the pacemaker I was given bisoprolol for A/F but it was causing pain in my joints.

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Don't see how a pacemaker works in a/f though - or is it just in case of v/f?

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I had never had V/F. What I will do is ask my cardiology nurse. He will know. The pacemaker regulates my pulse. It is never allowed to fall below 50. I would guess that it also stops it from racing too. It is monitored from a box at home and will flag up problems at the hospital. I guess the V/F aspect is only prophylactic.

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I wonder if that means they can medicate the a/f more - because one of the problems with that is that the QT part of the ECG can be lengthened - and that can cause the other symptoms I develop (but we've found no proof of that yet) and if it is too long, collapse and even curtains could be on the menu! Which is a bit scary!!!!

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Oh dear and you put with us moaning about far less symptoms 🥂🥂

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Sorry to hear that you are having a big flare. Hope you get it under control soon.

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Hi Jane, the fluid removal and injections were relatively pain free especially when you’ve been through the pains of PMR! They offered huge relief for me virtually instantly. Even walking out of the hospital was easier than when I arrived.

It’s never been suggested to me that steroid injections might affect my tapering. I wonder why that should be? My rheumy did say it remains very much in the joint. I’d have thought it would pass into the blood stream or body somehow.

They don’t believe I have OA but no idea what’s causing my knees to swell. My rheumy says I have PMR+ and I’m not presenting in a typical way.......or not that’s she’s experienced. None of this helps, does it ☹️

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Yes it does! I don’t feel so freaked out by the idea of the knee injection. Of course we’ve all become braver. Sorry to repeat patent nonsense about the steroid injection making tapering harder. I promise you, that’s why she didn’t do it there and then and I wasn’t brave enough to argue.

My X Ray showed mild OA in one knee and moderate in the back and front of the other. The pain is out of proportion, step forward PMR!

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It is a common finding that the x-rays don't always match the pain. Some people can be bone on bone with less pain than someone who, according to the doctor, shouldn't have pain.

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I wonder if the inflammation of PMR can make other conditions like OA seem to hurt more?

Maybe that Rheumatologist I saw before Dr Mackie was right when he said I also have Fibromyalgia?

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That's just a get-out for when they don't know!

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Or a mop up for symptoms that don’t fit and a way to get you off Pred when the pain is still pinging.

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See my earlier message....my ortho surgeon, once seeing two xrays a year apart, and reading the MRIs and my PMR history posited that 6 months of unchecked PMR and inflammation likely contributed to/advanced the deterioration of my knees and OA.

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My xrays the first time around didn’t show much. Then I had an MRI one knee at a time, and the true condition and problems with my knees became evident. Have you had an MRI? If not, insist (although here they would only do one at a time). Well worth it though, very helpful for the surgeon.

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I did last year. I don’t remember particular feedback about my knees, just my spine. Like a lot of us, I think PMR started a few months before diagnosis, so that would fit.

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An MRI on my knees hasn’t been suggested yet. If they continue to flare I’ll request one.

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I have tried 3 DMARDs, including Leflunamide which gave me very high blood pressure. None of them worked on my PMR.

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Hi Lochy,l was on a starter dose of 30 mgs and the swelling seemed to occur untill l had reduced to about ten mg,mostly during the first year.l have been taking pred for over two and one half years now and still get swollen feet and ankles sometimes.The GP did not seem that bothered and l just had to accept what he said,l also had swelling above my knees,which caused my legs to ache more.l must say l really am not sure exactly what caused it,and l am sure the steroid injections must be the right thing to help your knees feel less painful.ATB x.

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And your doctor didn’t push you towards steroid sparers or were you tapering successfully and hadn’t seen any rheumatologists?

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About your friend's dose, cortisol is usually hydrocortisone which is 4-5 mg to 1 mg pred. I am replacing 7mg pred with 30 mg hydrocortisone. FYI.

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And why do they change you to hydrocortisone? Is there a significant difference between them? I assume hydrocortisone also has similar side effects as prednisolone which must be concerning especially if you need a steroid for a disease such as Addisons.

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Have you had an MRI of your knees? I would suggest it as it provides a much more comprehensive “picture”. My former rheumy suspected I had some sort of inflammatory arthritis in addition to/or instead of PMR, and said she would take fluid at all 3 appointments....but never did! She also tested me for RA, negative. Lastly she threatened methotrexate at all appointments as well, but I refused. Hence she is no longer my rheummy. Instead I’m under the care of my wonderful GP who works with my ortho surgeon.

I’m awaiting a total knee replacement, and till then having steroid injections in my knee (2 now), which don’t hurt a bit but provide about 2.5 months of relief and better mobility. Thus far it hasn’t effected my taper of my oral dose.

Sure hope they get to the bottom of it all! It must be very frustrating to not have answers so you can create a treatment plan. Adding additional medications is one approach but hope you don’t experience additional side effects. We do what we need to to get relief, but sometimes it’s a process of experimentation. Keep us updated.

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Hi there, thanks for all your helpful replies. Did your knees flare again after injections every time? I do wonder if injections could manage things for me without the extra drugs. I too have resisted methotrexate. That is the option they always pursue first and I’m reluctant due to my elevated liver functions. Hydroxychloroquine has resulted in almost normal liver functions so will be interesting to see what the leflunomide does.

I still think if there’s no real change in knee symptoms with these extra drugs I’ll suggest I stop them. Next rheumy appointment is early June so a bit of time to work it out.

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My knees have chronic organic injuries, and OA in the right one (some bone-on-bone contact, so that one has to be replaced. In that sense they are always swollen and have some fluid. The injection in my right knee has provided me with amazing relief that lasts about 2.5 months. The left one, although having some meniscal tears is not as bad so I’m hoping with weight loss, and the pred keeping the inflammation at bay, it won’t require treatment.

As I taper slowly the pred keeps the inflammation controlled therefore I don’t have as much pain, but it doesn’t help with the pain in right knee caused by OA and cartilage deterioration. Even Tylenol 3 doesn’t help much with that, only the injections do.

Hope that answers your question. Hope you get things sorted. My knees seem to be impacted by PMR, organic, chronic injury, OA and my being overweight for years. All a puzzle to put together.

Good luck and keep us updated.

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Hi Lochy,l was referred to a Rheumatologist but they wrote back,and said as l was only on 3 mg, at the time ,they did not think it was necessary.l had been to see a GP because l had stiffness in my legs and some swelling.however l was not given the appointment with the Rheumatologist and have never seen one although l have had PMR for over two and one half years.l had tapered successfully ,untill six months ago when l had a flare .l hope that you get things sorted soon x.

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