lion king returns.

[kennyboy]

I have been away from this site for awhile so am updating my profile on my pmr, I have had it since august 2013 have managed to reduce Pred. to 5mgs. But have

started to have trouble with the knuckle joints on both hands swollen some times. My doctor arranged my first app. with rheumatologist in august and had a scan on hands, no sign of arthritis so I to reduce pain in hands upped pred to 7mgs

Consultant suggested today that I should think about taking Methotrexate tabs for the inflammation on my hands as for the moment I cannot reduce my Pred. any lower at this time.

[PMRpro Ambassador]

i don't think that knuckle problems are typical of PMR - so does he suspect that it may not be just PMR or not even PMR but that late onset RA presented as PMR? If so - the methotrexate makes sense, If it is still felt to be PMR - then barely 3 years and a dose of 7mg is fair enough. Afer 12 years of PMR. 7 of pred I'd be delighted if 7mg cut the mustard!

[Rokerman]

Hi Kennyboy - my own history is: a diagnosis in April 2016 (the best £300 I've ever invested in private medicine......), an initial doseage of 15mg, not entirely successful so increased to 20mg; tapering down at 2.5mg per month and now slowed to 0.5mg/month and currently on 8.5, about to go to 8.0mg. (incidentally, the rheumotologist seems happy enough to go with my own doseage requests and, so far, my GP acquiesces !)

I've had many of the symptoms noted by other contributors to this forum (although not necessarily following the same order, in terms of Pred reductions !) - However, last month I experienced the same knuckle pains that you describe - this manifested itself when I met anyone with a firm handshake - excruciating!

One constant complaint is a total weakness in the wrists - to the point that holding/filling a kettle first thing in the morning requires both hands - have never felt so feeble! However, I would hope not to have to augment my medication with drugs other than Pred. If it's any consolation, the knuckle pains do seem to have abated.

Good Luck !

[PMRpro Ambassador in reply to Rokerman]

Interesting - I had the weak hands bit as part of PMR. Luckily I have a tap that pulls out - I take it to the kettle not the kettle to it!

[Ronswife]

@kennyboy I have PMR this year diagnosed and it started with my hands swelling as I work as a metalsmith jeweler. In a week it had taken my arms and whole body. I thought it was arthritis and was not able to see a rheumatologist for two months. After the first month of feeling like glass that could crack and not able to lift myself out of bed, wanting to die from pain so severe, the doctors assistant, a fresh out of college woman, gave me 10 mg of Prednisone. My blood tests indicated lupus but I am 67 and not the age group for lupus. Finally seeing a rheumatology and he upped it to 20 mg and I am now at 11.5 and have my hands back and did not suffer joint damage. 12 years ago I had the same progression of swollen hands and knees, severe pain but although I had no strength the flare was over a smaller area. The md gave me methotrexate and said I had RA. After 6 months the pain subsided. After 2 years a Rheumatology said I had osteoarthritis and took no medicine as it was over until 10 years past now. All this really confused my present diagnosis. I would say MTX is slow at reducing the pain and hands swelling does not necessarily mean RA. I hope you will go easy working with your hands and see the rheumatologist. Going back up to a higher comfort dose of pred is probably what will be needed.

[PMRpro Ambassador in reply to Ronswife]

Perhaps you need to seek the advice of a lupus specialist if you have positive lupus blood tests:

"SLE predominantly affects women, particularly during their childbearing years.[6] However, life expectancy increased substantially in the second half of the 20th century with the diagnosis of SLE among older individuals increasing in parallel; in fact, lupus late in life may occur in up to 25% of all patients.[7] As the age at onset has been recognized as having a modifying effect on the clinical manifestations of SLE, late-onset disease is considered a specific SLE patient subset; however, relatively few studies have focused on this patient subgroup. As new studies emerge, some misconceptions (fictions) are being replaced by facts. We are now summarizing the available literature data regarding this SLE patient subset.

The majority of studies have arbitrarily defined SLE as late onset if it is diagnosed at age 50 or beyond.[6,8,9] However, in recent studies a cut-off age of 65years or even greater has been proposed,[10-12] given the increased life expectancy of the general population."

This is from Medscape - freely available but I think you have to register.

Since you say the first episode of the symptoms was 12 years ago, you were well within the age range for late-onset lupus at that time - and lupus doesn't go away.

There is a blog called Despite Lupus by Sara Gorman based in the US and if I remember rightly she has a directory of particularly recommended specialists - she herself does a great deal of advocacy. It might be worth considering.

[Ronswife in reply to PMRpro]

@PMRPro Thank you for that information. My rheumatologist continues to watch for Lupus symptoms. I see him again in November. He was not my MD 12 years ago. I had a ten year remission. Except for the high blood tests I do not know of other symptoms like mine but I will study up and see.

[PMRpro Ambassador in reply to Ronswife]

There is a superb Lupus group on this site

healthunlocked.com/lupusuk

and the community there will answer all sorts of questions about strange lupus presentations. There are a few of them who have enormous background knowledge and they are a very supportive lot.

You obviously have some to be considered for PMR.

[Ronswife in reply to PMRpro]

I will check out the lupus forem. Thanks.

[Hidden]

The hand shaking pain thing happened to me too. It went after a few weeks and touch wood hasn't returned, I didn't think of it as part of the PMR\GCA, actually forgot all about it and didn't mention it at all.

[PMRpro Ambassador in reply to Hidden]

I had it with legs - but never considered it part of PMR. Now you have made me wonder...

[kennyboy]

Thanks for the replies, the rhuematolagist gave me a leaflet to read so that I must decide if I take the Methotrexate tabs at my next appointment, as there are many side effects with these tablets and there are blood tests every 2 weeks for the first few months. Any advise from persons taking these tablets please would be welcome

Regards kennyboy