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.
Btw....I should also add, the numbness has also spread to my hands now!
Hi Lynda I just answered Sami then I seen your post. My feet are sore and tingly all day and night. Actually at night they feel more like a burning feeling. Pred doesn't make any difference in my case.
yes, there's a slight burning feeling in mine as well. Funny, I'd not thought of that till you mentioned it! I guess that's one more reason this forum's so iinvaluable ...sharing!!
Hi Lynda and Vicki, Sounds as if it could be peripheral neuropathy. A possibillity.
Thank you for info Elijo , I will read all about it now.
going to Google it now! thx. Elijo!....
vicki...please let me know how you're doin in the future!
Hi lynda62707
Sorry to hear you are experiencing tingling and burning in your feet. I didn't experience that whilst on preds. Have sent a list of meds that cause Peripheral Neuropathy....hope you can get to the bottom of it it not a nice sensation. B12 deficiency can cause tingling have you had your B12 checked?
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
hi Mary...thanks to elijo, I googled peripheral neuropathy and Omg....I HAD 8 out of 10 of the symptoms (big time!). so low and behold....yet ONE more thing to be concerned about!.... I can't Deal!😱😖
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?
Hi Elijo I was finally able to read the info, I do have a few of the symptoms ,I will definately show the doc what I have read. Thank you again
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....
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!
Pred can lead to neuropathies, yes. It is a listed side effect, albeit pretty rare. But that doesn't mean it doesn't happen.
There is nothing to stop you stopping the pred by tapering slowly to zero - no-one forces you to take it. Just remember that if you do you will get the PMR symptoms back in force. And PMR lasts a lot longer than 6 months and unmanaged inflammation has consequences of its own.
If you really find taking pred so awful, then you have to try the options offered by your doctors such as methotrexate. A majority of people on the forums with a PMR diagnosis have found it didn't help or they couldn't cope with its side effects - but the only way you can know if it applies to you is to try it, not reject the idea. You are in the USA - Actemra may be an option for you . It isn't for anyone with PMR outside the USA. So consider that.
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 ?
Hi lynda62707
Oh no!...this is how it goes you will find as you go along another side effect pops into the arena. They hit you out of the blue. I was getting them from all sides. Ok, the pain of PMR has been controlled by pred wonderful!😊🤗 but what is the point if you have a ton of other maladies to deal with, some of which are more intolerable than PMR pain. Such a merry go round of side effects. I do feel for you lynda and all the members who are going through it., but fight the good fight..hang on in there and slowly taper off pred see yourself this time next year😁...you may not be fully rid of PMR, but you will only have that to deal with...not a myriad of side effects with it!..be strong we are all made of strong stuff when we need it...keep the faith!...heaps of loving thoughts and the kindest of wishes to you and all the members on the forum who are dealing with this malady....👍💞
(by the way did you notice preds were not on that list of meds that causes PN)...
Faye I'm in the US....and you? Lynda
lol mary....truth be told, I was unable to read the list if meds you sent me (due to the condition of my eyesight right now!😖) it was just too small to see! Sorry😭.... my phone's also on the "fritz" right now, so it's making everything very difficult as far as typing and performance.....Ughhh!