.....more numbness!

Posted , 9 users are following.

Ok, so I've REALLY been paying attention to the numb/tingly feeling in my feet.

I think I may have it (possibly) figured out!

for the last few days, in the am (prior to dose of prednisone) my feet have been relatively "numb free'. about 1hr after taking pred. the numbness starts up again and continues throughout the entire day/night!

it seems to me this is prednisone related. does this make sense? has anyone else experienced this?

I've been on prednisone for approximately 6mo now, bounced dosage around 15mg....starting (yet again!) another taper today to 14mg.

I'm never quite sure what to anticipate as it's all been such a "bumpy" ride! I only know I'm anxious to stop this medication asap as I've had SO many problems/side effects!

any input/advice would be greatly appreciated.

0 likes, 46 replies

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  • Posted

    Hi Linda

    I was diagnosed with PMR in June, long story short...I started on 50mg, I'm now on 7.5mg ...5mg in the morning and 2.5mg in the evening I am also on MTX as my new specialist as diagnosed me with RA as well ...But I found the Pred is a bit more tolerated now and the relief it gives is spread out...it might help you. because just like you I have a very low tolerance to the stuff..

    Cheers

    • Posted

      hi Faye...wow! dx in June (may for myself)....started at 50 now at 7.5😱 that's terrific! Wasn't that a bit FAST??

      well if you're doin ok, I'm very happy for you (a bit envious) but Happy!

      my Reuhmatologist suggested I start taking mtx, but I declined as I'd heard too many negative things about it.

      what's been your experience?

    • Posted

      I have been on MTX for only 1 month so I think its to soon to really know. I do feel better, I still get pain, but I am stubborn I just deal with it, I push myself as hard as I can. most of my friends & my doctor think I am crazy, but this thing is definately not going to beat me....my Rheumatologist doesnt really know me yet as he is no 2 so far haha....

    • Posted

      Faye...I too am Stubborn, so I completely "get" what you mean about not letting it Beat you!

      I must confess tho....I DO get tired and frustrated😖👎

      there are 'tons' of folks on this forum who have been battling this disease for Years....quite frankly, I don't know how they've done it!

    • Posted

      I do get all the people on this forum , I understand the battles they have been through and are still going through it. But I do not intend to let myself give in to it pain or no pain. I am now slowing the taper down, I can manage my pain levels , I push hard when I exercise I also swim , I find it helps and I like being proactive..

      goodluck Linda I hope all goes well for you, just dont give into it.....

      are you it the uk or us ?

    • Posted

      Hi Lynda

      I"m in Sydney, Australia, I was wondering why all the different medication names are so different, also I wonder why people have to wait so long to see their doctor.

      Faye...

    • Posted

      Hello Faye

      I live in Sydney as well, I can't believe the length of time it took to get a diagnosis in the 1st place.

      Vicki

    • Posted

      The actual substance names are all the same, wherever they are used and that is why in the UK we generally call medications by the substance name - except for the first several years when a new drug is protected by patent and so only that company may use the brand name. As a result, the market research done before the launch of a new drug also looks at the name to be used in a given country - cultural background and language both impact heavily on that and the name is important in the context of advertising and associations made. In a country where only doctors may be advertised to a complicated name may be acceptable, where it is to be advertised to the public it may not. It has to sound right - just the same as a drink or a washing powder!

      As for why people have to wait a long time to see a doctor - supply and demand! There is a world shortage of rheumatology qualified doctors and within a given country some areas are more popular than others so doctors go there happily while other regions struggle to recruit. And funding varies too.

    • Posted

      There is no easy diagnosis for PMR or GCA - there are no definitive tests for PMR at all and PMR isn't the disease, it is the outward expression of an underlying illness, of which there are several which have to be ruled out first, always supposing the lightbulb moment happened for the GP when the patient described what are rather vague symptoms that could be related to aging anyway (I don't think it is an excuse really, but that is a reality).

      While GCA does have a definitive test, the TAB, you have to have a strong suspicion in order to request such an invasive test and GPs often don't recognise it. Of all the quoted symptoms each only appears in at most half of patients. Headache is the presenting complaint for less than half although about 70% will have headache at some point, but even the headache can vary - but doctors seem to think it is an essential criterion. And while the TAB is 100% certain when it is positive, it is positive in less than half of patients too - for a range of reasons - and a negative TAB doesn't mean that you don't have GCA, it means they didn't find what they were looking for. GCA is rare - a GP may never have seen a case in their life and just heard about it in passing.

    • Posted

      Hi Vicki

      I was lucky, my GP diagnosed me straight away within 3 days, he waited for the blood tests, he organised me to see a rheum. specialist at the same time. he pulled a few strings and in I went the specialist comfirmed the diagnosis. I now have progressed into RA that is what my 2nd specialist has told me, I think the PMR syptoms are now starting to fade out. But the RA pain can be very daunting especially as it is in my hands and to a lesser degree my shoulders. I sometimes get early morning pain in my hips, but it is gone within 1/2 hour of moving around. I hope I can get off all medication quickly, as my patience is at a all time low, where (ball park) abouts in Sydney do you live ?

      Faye

    • Posted

      Hi Faye

      You were very lucky getting a quick diagnosis.

      I am up to 103 days and only just seeing a specialist.

      Reading everyones posts I now know this is ridiculous.

      I live in Canterbury /Bankstown area.

      Vicki

    • Posted

      Hi Vicki

      I live in Penrith/Windsor area. My GP believes the PMR should be done and dusted by xmas I hope he is right, but he not saaying much about th RA...I'm happy with my GP he actually listens to me...I hope they sort you out quickly, dont except everything they say and ask questions, and dont give in to it. good luck Faye

    • Posted

      3 months is pretty quick compared with many - in Northern Ireland there is an 18 month wait for a non-urgent appointment! PMR is not seen as urgent - in many countries it it diagnosed and managed by GPs and some people never see a rheumatologist. And for some, even when they do the experience adds nothing to their management! A lot of rheumies seem to think PMR is beneath them...

    • Posted

      Hi Eileen

      That wait is outrageous, is there a shortage of medical personel ? The powers to be here say we have a shortage and our hospital system is a mess, but I've never experienced any problems in accessing specialists. I also see my GP within 24 hrs or straight away if I need toNot that I think some of them really know any better than the good old GP. It's the system see your GP, then a specialist, I think extreme pain as in PMR certainly warrants immediate attention, I'm glad I haven't experienced an eighteen month wait !! I wonder if that is why PMR lasts as long as it does, because it isn't addressed in the early stages....

    • Posted

      Yes - as I said before, there is a world shortage of specialists in rheumatology and there are some places they just don't want to go to work. It doesn't actually make that much difference to how long PMR lasts - it will resolve in the end on its own anyway for the majority of patients and the pred isn't doing anything to the actual disease process, just providing pain relief to allow a better QOL.

    • Posted

      The thing is! my GP is not managing me properly, so I found out from this forum and all the very useful info that comes from it. I hope my rhuemy is on the ball tomorrow .

    • Posted

      Fingers crossed! Though with some I wouldn't hold my breath...

    • Posted

      I wish you well with your rhuemy appointment. When I read some of the comments on this forum, it just makes me feel very lucky I have a very caring GP, not sure about the rheumy but, I'll see him next week with a ton of a questions.

      I have heard nothing but good things about him, my first appointment went well but, he will have to earn my trust ......who knows.......

      good luck Vicki !!!!

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