Opinions

[yorkieme]

Hi to everyone on this sunny Sunday morning,hope you are all as well as can be and ready for a day outside enjoying the freedom. My story seems to be moving on a little but I would like to hear any opinion regarding my latest situation. I am due further blood tests on Monday after which my rheumatologist has said that she will formulate a plan for moving forward.( includes taking me off Pred' and I am presently reducing,)

a,) Initially I presented with PMR symptoms,pain in all the right areas etc. b,) Started on 15mg Pred' and within days the pain disappeared. Week later the pain returned but being abroad could not increase the Pred' so private doctor prescribed Tramadol with very limited effect. c,) Arrived home after five weeks,pred' increased to 60mg through fear of GCA. d,) Numerous trips to hospital due to complications such as pneumonia,twice.Non Hodgkins,(no treatment,)leading to the finding of a dodgy left ventricle.(not unusual apparently,)Been told I have a systemic problem and that it's a complicated case. e,) Thanks to advice from those on this forum the one big improvement is splitting my Pred' dose, presently two thirds morning and one third tea time. 15mg in total.

I have a situation now where any pain that I suffer is in the back of my upper arms,wrists,palm area of my hand. I haven't had pain in my neck,shoulders,girdle,buttocks etc, since the early days. When I have pain in my shoulders,wrists and palm then codeine makes it manageable. This pain seems to come and go based more on my energy output,(i,e.doing too much,)

My question is this; having researched the Palmar Arteries,(ulner and radial,) and Median and Ulner nerves is there any suggestion that my issues could be connected to the carpal tunnel surgery that I had three years ago on both hands ? The pain is localised around my thumb/wrist area but not on the back of my hands. It's a long shot but I am interested simply because my rheumatologist has said that I shouldn't be on Pred' and that the high dose has damaged me. If I shouldn't be on Pred' do I have PMR ?

Comments would be much appreciated. Thank you.

[PMRpro Ambassador]

I think you have to wait and see what she comes up with. I also think the question is the wrong way round: IF it is PMR, then pred is the right approach. There is no other. So: Is it PMR? Or what? I am left to wonder how she manages her GCA patients who need high dose pred ... Unless she comes up with a credible answer that she can manage well with something else, I would seek a second opinion. She sounds unreasonably prejudiced against pred - and it MAY turn out to be the solution to allow you a decent QOL.

Your response to pred was typical of PMR - but that doesn't mean it is PMR. It could be something else with a polymyalgic presentation (looks like PMR). The upper arm pain isn't typical of carpal tunnel problems - but sound similar to the pain I can have when my myofascial pain syndrome is making its presence felt. It does improve with ibuprofen - don't know if that would apply for codeine, I can't take it.

[yorkieme in reply to PMRpro]

Thank you for your response,if it's o.k. with you I would like to take a little more of your time with regard to the content. I completely understand that this is a site for PMR/GCA and that all advice comments are made on the basis of individual experience and are not professional.

I am interested in your comment about myofascial pain. Quite a few years ago while helping my neighbour on the next plot to ours out in Spain I helped him lift a leather sofa up onto a mezzanine floor,he was above and I was below.I had the full weight on my head/neck when he accidentally lost his grip resulting in a pretty serious pain for me to the right side of my neck. Ever since then if I lift my arm suddenly say while showering or whatever the same spasm hits me from neck area above my shoulder up behind my right ear.It doesn't last long but it does leave a painful feeling in that area for a while after.

I also take on board your comment regarding carpal tunnel and the upper arm pain,however,once again having had both hands operated on and looking at the route of the median nerve which passes through the carpal tunnel to the affected area of my palm I wondered about potential post operative trauma of some kind causing inflammation ? All wild thinking on my part but I have a G.P. who at the moment refuses to accept that an appointment would allow me to discuss my case,and a rheumy who when I do see her refuses to indulge in any discussion. I just keep thinking that from day one we have gone down one route at a time of numerous complications and not stopped to consider other possibilities.

I am now starting to wonder if there is any connection but as you say must wait for my Rheumatologist to come up with her conclusion. She seems keen to get me on Methotraxate ? but if steroids are not considered appropriate then I see no sense in jumping in with anything else for now.

[PMRpro Ambassador in reply to yorkieme]

Was that injury ever investigated?

I would be surprised if the carpal tunnel surgery resulted in pain further up the arm - but not being a neurosurgeon, I don't know!

Are you saying your doctors are being reactive rather than proactive? I do prefer doctors who are able to look at the overall picture and think outside the box. They might come to the same conclusion in the end but at least you feel more confident that they thought about it!!

[yorkieme in reply to PMRpro]

Exactly. Proactive in the sense that they have moved me around the various consultants,(which I am extremely grateful for,) but the G.P. is almost single minded/convinced it's PMR while the Rheumatologist is not sure what it is but will only ask quick fire questions rather than discuss the whole case.

I'm pretty certain that you are spot on,wait for the verdict but be prepared to dig in if need be.

[Theziggy]

Sunday???

[PMRpro Ambassador in reply to Theziggy]

Never noticed!!!!!! Every day is much the same at present...

[Yellowbluebell in reply to PMRpro]

I was checking to see if from abroad and a day ahead!!!

[yorkieme in reply to Yellowbluebell]

Sorry.

[PMRpro Ambassador in reply to Yellowbluebell]

Even Oz isn't 24 hours ahead!!

[Yellowbluebell in reply to PMRpro]

I thought I had finally gone complete bonkers. It wont take much to push me over the edge especially after the last couple of weeks!!

[yorkieme in reply to Theziggy]

My wife said the same thing to me,she also sympathised that I might be losing the plot.lol.

[Yellowbluebell in reply to yorkieme]

It's the pred!! That's my excuse for lapses.

[yorkieme in reply to Yellowbluebell]

Once again I am sorry.I realised when I bought The Daily Mail newspaper,got back in the car and told my wife the idiot in the paper shop had sold me yesterdays paper and not The Mail on Sunday ??? Bless her she broke it gently ........... as in you've lost the plot it's Saturday.

[piglette]

The pain in your thumb / wrist could be carpal tunnel syndrome you could look it up on Google to see if it compares.

[yorkieme in reply to piglette]

Thanks for your reply.I had decompression ops' on both around three years ago and they have been o.k. up to now. It just seems strange that I get this pain in my wrists and the Flexor/Abductor muscle area of the palms so as a long shot I have been looking at the vessels,nerves and muscles involved.

I suspect these are the last struggles of someone with PMR but have yet to have it confirmed.