Struggling with outcome of Rheumy Consultation

[Joann63]

Yesterday I had my long awaited Rheumy Consultation, anxious and excited at the same time, I'm finally going to get some relief from this nightmare I'm in. I don't react well to stetoids and due to my heart failure and reduced kidney function I'm also unable to take anti-inflammatories long term. Imagine my disappointment on hearing the consultant say there's nothing he can do for me. The best he has to offer is keep taking the codine and paracetamol daily exercises might help. Oh and I'll have a telephone consultation in 3 months. Surely I can't be the only person with my particular set of spanners in the works /issues. Any advise is greatly appreciated

[SheffieldJane]

I am so sorry. When I read of your situation I was wondering what your Rheumatologist could do. I didn’t expect “ nothing”!

Obviously you need a second opinion. Where in the U.K. do you live? Someone maybe able to make a recommendation. The things that occurred to me were steroid sparers, a special case for Tocilizumab. Explore whether Steroids are completely out, with your cardiologist. You cannot be condemned to a life of pain and mobility issues. Let us know how this unfolds.

[Joann63 in reply to SheffieldJane]

Not the response I was expecting either. I'll mention to my GP about steroid spares. Steroids are completely out, I've had them 3 times over the years and each time they make me I'll.

[piglette]

Did he diagnose PMR? What was his reason for saying he could not help you? It sounds a bit of a cop out. Do codeine and paracetamol work? Can you exercise easily?

[Joann63 in reply to piglette]

Codine and paracetamol eork to an extent. Exercise is painfully and I'm nor very mobile. As I cant take stetoids and anti inflame can affect my heart was his reasoning.

[piglette in reply to Joann63]

Quite a few people on this board do have heart problems. It really depends what sort of heart problems you have whether it is a good idea to avoid steroids or not. A second opinion may be helpful.

[Doublef in reply to Joann63]

I have heart failure with a pacemaker fibrilater GCA diabetes and a large amount of medication including steroids . Recently had a flare and had to start again on 60m. I feel lousy every single day but never been told I cannot take steroids in fact I'm also going to be put on !methotrexate and good acid. Your kidney problem an be a problem but I would I would ask the question .good luck

[Joann63 in reply to Doublef]

I'm intolerant of steroids that's why I can't have them. I too have a pacemaker and defib. I went to see my GP yesterday and he's going to contact the Rheumy consultant to discuss my appointment and push for alternative options

[DorsetLady PMRGCAuk volunteer]

Agree with piglette sounds a cop out to me, although you cannot take steroids, there may be other options [not as good as steroids admittedly] but he should at least be looking for another solution… not just cutting you adrift.

There are a few member who cannot take steroids Bramble2000 being one, hopefully she will be along to offer something.

[Joann63 in reply to DorsetLady]

Thanks. when I asked what am I supposed to do and his response was pain relief and exercise I explained I had seen a physio who advised me to go back when I was in less pain with a few weeks of treatment behind me he just said OK next appointment in 3 months will be a telephone consultation

[DorsetLady PMRGCAuk volunteer in reply to Joann63]

Not the correct answer…. What a waste of space. What happened to “doing the best for the patient”?.

Do you have a GP who might be more sensible?

[Joann63 in reply to DorsetLady]

I have a GP appointment tomorrow I'm hoping for a 2nd opinion annoying as I waited 6 weeks as urgent for the 1st one. On the plus side I don't have any rashes

[DorsetLady PMRGCAuk volunteer in reply to Joann63]

Please let us know how you get on….

[PMRpro Ambassador in reply to Joann63]

Have you actually got a diagnosis? He should know that ordinary pain killers do next to nothing for PMR. I have longstanding back problems that I can manage brilliantly with a single dose of ibuprofen a day - but a few weeks ago the pain clinic doctor was very iffy about that for more than a few weeks because of renal and cardiac risks. Paracetamol doesn't achieve a lot.

There are people on the forum who have done well on hydroxychloroquine or leflunomide. I don't know off the top of my head how they mix with renal and cardiac issues - you would have to ask your doctors. A quick look suggests leflunomide is nephrotoxic so maybe not. Hydroxychloroquine seems a possibility so worth asking about. They can only say no.

[Bramble2000 in reply to DorsetLady]

Hi, it’s so incredibly frustrating to wait so long to be seen and to get nothing out of the consultation. I can’t take steroids either. Well, I can, but I have intolerable side effects that I’m sure you are familiar with. If you’re dealing with PMR(?), and can’t tolerate the steroids, the only other course of action under the NHS is Methotrexate. The problem with Methotrexate is that the results for PMR use are mixed at best. I’m not trying to put a downer on it but there’s also the side effects to deal with which for some can be quite strong. PMR for some of us is extremely debilitating. Some of us have had a real fight to get diagnosed too. By the time I got diagnosed, I was pretty much bedbound and then needed carers to come in and help me every day. I’ve made peace with my situation but the pain gets me down sometimes. Regarding the Codeine, it’s unlikely to do anything for PMR. If you’re getting some relief with it, you might want to question the diagnosis of PMR. All the very best to you.

[DorsetLady PMRGCAuk volunteer in reply to Bramble2000]

I know you meant this for Joann63 but you replied to me…. she will see it… and thanks -hoped you would respond.

[Bramble2000 in reply to DorsetLady]

Apologies! Been a long night 😆

[DorsetLady PMRGCAuk volunteer in reply to Bramble2000]

No probs...I'd read it anyway..

[Flivoless]

I have recently suffered antifib and heart failure problem and underwent a cardioversion op. The Doctors were fully aware that I have been on Pred for over two years (now down to 3mg) but didn't raise any concerns with the op or the plethora of meds I now have.

[Missus835]

That rheumy sounds so much like mine. Fob you off for the 3 month follow-up. A lot can happen in 3 months and trying to reach her when something does...mission impossible. You're better off without him. Hoping you get some answers soon Joann63. I know the pain of going undiagnosed. My now retired GP kept telling me the PMR was "just old age". 🌹

[BeachsideVia]

Hi dear, many of us are in this revolving door of pain and no answers. I was told I have inflammatory arthritis, nothing they can do. What I did is read read read! What contributed to inflammation, and what can I do. It’s not a given that anything will help, but I certainly dont want to make things worse. I am gluten free, dairy free, grain free, seed oil free, histamine free…. And yes, there is almost nothing I can eat! Since quitting MTX I have not had knee or ankle flares. BUT this past week has been hell! R shoulder painful flare, painful for week and a half…. Took a steroid dose pak, some relief after 4 days, meanwhile lower back starts hurting, finished dose pak, back is screaming, cannot sit, have an orthopedic appt this afternoon. Storms predicted, not sure I can even drive, will probably cancel because” what would they do anyway?” Heat seems to help. I was desperate last night and took 2 aleve at my peril. It helped, but this morning I have stomach pain. Taking extra BP meds to stop a spike. Tried tylenol, does not work.

So… I will get through this! I wonder if steroids affected my back? I have lost weight over time, I have had pre diabetes and my A1c is normal, my cholesterol is good. Why I get these overwhelming episodes of pain, I may never know. I will reschedule my orthopedic doc and now will not leave until he explains to me what is going on.

[PMRpro Ambassador in reply to BeachsideVia]

Have they tried various biologics? Seems rather strange to claim there is nothing available for inflammatory arthritis ...

[BeachsideVia in reply to PMRpro]

Thanks for your response. For one, I have

MGUS, and I have read biologics may hasten development of Multiple Myeloma. Also, i don”t know how I would afford biologics, here in the US. My Rheumatologist was very dismissive, and I actually think he has problems, but I will not go back to him ever, and have a good pcp now, but I need to form a plan, especially after these two painful episodes. I have to cancel the orthopedic appt today, but will see my pcp tomorrow, with a list that includes my uncontrolled BP, my osteoporosis, possible low thyroid, my neuropathy, and my shoulder and back. Bloodwork is so slow here, almost 2 weeks to get results, just got mine, looks good, but Gastro doc wants test for cirrhosis too. If I get overwhelmed, what good will that do? I will talk to my doc about getting a competent Rheumy.

[PMRpro Ambassador in reply to BeachsideVia]

Fair enough - what about DMARDs? Which is where they usually start for inflammatory arthritis ...

[BeachsideVia in reply to PMRpro]

A few years ago I was put on HCQ and it helped a little with my wrists and back. Went off it a year ago because of eye issues, and little effect. I had such bad flares I asked my rheumy to put me on MTX. It seemed to help a little, the knee flares stopped, but I had nausea and then serious hair loss. I also developed a fatty liver. My Rheumy prescribed Arava, with no plan as to decreasing MTX. I read about Arava side effects and was afraid to take it. I told him my gastro found fatty liver and he said he was not interested. Thats when I knew I was done. What other D mards would be helpful?

[PMRpro Ambassador in reply to BeachsideVia]

There are a couple - but of course the liver problem makes it difficult. Sulphasalazine is a favourite starter but it too has liver implications. So does the Arava/leflunomide but people do take it without problems. Not impressed by your rheumy's collaborative skills though.