Diagnose with Lymes then PMR
Posted , 10 users are following.
56 Diagnosed with PMR
20 MG of pred. Per day due to waking up one morning in extreme pain. Feeling like a pc. Of steel my wife had to move my legs out of bed and push me up and off to the ER Also Left hand swelling and feeling like a catchers mitt. Right hand same feeling but only a 3rd of the left. Unfortuneatly left handed. Very depressed as not being able to play guitar and do alot of things that require detailed hand feeling. (Is anyone else having issues with their hands ?) If so is there a medication for the hands ? When will all this go away ?
0 likes, 19 replies
shelley45866 Blockhead
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sherri74011 Blockhead
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I am six months into my journey with pmr and 1 year with mgus. Probably had both for much longer these are just my diagnosis times.
I'm left handed and a dog groomer, over the last two months I feel like arthritis in my left hand. I also get cramps in my fingers??
No idea if this too will pass
EileenH Blockhead
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If what you have is PMR and that is what is causing your hand pain - then you have pred. Nothing else works in PMR except Actemra but that is heavy-duty stuff and not yet approved for PMR, just GCA.
When will it go away? How long is a piece of string! 75% of patients with PMR are in remission and off pred in somewhere between 2 and 6 years. The rest of us take longer. But for most people it does go into remission.
Michdonn Blockhead
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Blockhead, we are all on the same journey. Believe me I know what it is like not to be able to move my legs, my wife had to help me also. Do yourself a big favor do not rush to get off prednisone. I know the side effects are terrible, but much better than the PMR pain. I have a flare dropping from 8 to 7 mg, and it was worse than the onset. Consequently I now taper slowly PMR pain free. I will not reduce if I have any PMR pain. Last winter on Pred I worked all season as a ski instructor, now still recuperating from flare I walk twice a day back April I could not walk. Try to get active as soon as you can, but be very careful not to over do it. Rest during what ever activity you are doing. As I stated before we are all on this journey, ask questions we will try to help. Think positive and try to get a smile on your face, I got one on mine! 🙂
Twopies Blockhead
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peggy_56092 Blockhead
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cindy58102 Blockhead
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Hey BH. I'm new here, my 1st post, diagnosed 9 months ago though undiagnosed since 2012. All was blamed on my osteoarthritis. Anywho, swelling in hands and feet is an issue for me. Fingers feel like sausages and they don't work as well as they once did. I'm down to 11mg and am doing ok pain and mobility wise, however the dose doesn't correct the swelling. With that said, wondering if the swelling is due to osteo since pred should alleviate that symptom as well.... no? Also, empathy and understanding for your depression. Never knew depression till pmr. Just coming out of a very hopeless place. Was an athlete, now not. Tennis 4 days per week now I'm blessed with 1, maybe. Trying to walk my dogs 1 mile every other day. Exhausting. But we must keep moving even though moving hurts! Stay connected, I'm hoping it helps.
Blockhead cindy58102
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Hang in there, I'm going to start up my weekly work out routine again as best I can thanks to prednisone but very concerned about my habd swelling and numbness. Getting more blood work and EMG testing. Dr. Says hand issue is due to something else going on and really isn't part of the PMR Will know more in a couple weeks
EileenH cindy58102
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" we must keep moving even though moving hurts" - but not too much! You have to identify your limits and stick to them or you will make your muscles sore and they take a long time to recover when you have PMR, it's part of the illness.
Swelling is sometimes part of PMR: "An unusual manifestation of distal involvement is the puffy edematous hand syndrome, or remitting symmetrical synovitis with peripheral edema (RS3PE) syndrome" It does not always respond to pred as well as PMR symptoms in general.
Blockhead EileenH
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EileenH Blockhead
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By the way - your doctors suggestion of 1mg per week is far too fast. You MIGHT manage 1mg every 2 weeks.
TheRaven Blockhead
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My introduction to PMR was just over a year ago, with what I now understand to be classic symptoms of worsening shoulder, bicep, thigh and knee pain. My GP diagnosed it as Lymes and loaded me with antibiotics for it and Ibuprofen for the pain. Neither helped one bit. I then was pushed on to a Rheumy but at the same time the GP decided to put me on 20 mg of Prednisone to see how I reacted. Wonder drug - all was well I thought by the time I saw the rheumy the first time. Then he dropped me to 15 mg in 3 weeks and tried to drop me to 10 mg after 3 more weeks. (This was before I knew anything about this site) I flared up big time, hurting worse than originally, and had to go back up to 20 mg for relief. It's been a year now, I've had a couple flares because of ignorant doctors, had to go as high as 30 mg on Pred, but I'm finally successfully on a slow reduction and taking control of my treatment. However, I did have very swollen and stiff hands and toes after my 2nd flare up. It was probably 2-3 months before the hands very gradually became close to normal. I still notice a bit of loss with my dexterity - my handwriting mainly. The toes and pad of the feet are still swollen and stiff but slowly improving. Hopefully this improvement over time will happen for you too.
Blockhead TheRaven
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Your symptoms sound similar to mine.
My age: 56 Activity: Athletic type: Always on the go type of person.
1st Symptoms, Sore shoulders.
2nd Awoke in the middle of night with shooting nerve pain down left arm, mainly from elbow and out to the end of 2 middle fingers. Almost as if someone took a gun and shot a bullet thru my elbow and out the end of my 2 fingers. Same for right arm but not as bad. Had this for about 3 nights in a row.
3rd Other minor joint pain with no swelling.
4th Awoke one morning and could not move, wife moved legs out of bed and had to push me up right, was walking like a 90 year old to the bathroom. Any and all movement was like trying to bend steel, very escrushiating pain!
off to the emergency room that day.
Tried everything, Naproxen, ibuprofen, and other over counter stuff. Nothing touched it. With family help and in search of what I might have, we came up with PMR and requested my Dr. to order a script for prednisone. (Immediate relief)
Treatment: 1st treated for Lyme with 21 days of antibiotics still while on Pred.
I visited a specialist; Rheumatologist who clarified the PMR but is baffled and concerned by the hand swelling and pain. Will be visiting a Neurologist to perform EMG testing of the nerves in my arms. Have had a lot of blood/lab work and testing for many things. Dr. Shearman of Portsmouth NH is the Rheumatologist and seems very good with this PMR and concerned.
Is going to downsize my use of Prednisone from 20 MG by taking 10 MG in the morning and 10 prior bed. His plan is to reduce the evening dose 1 MG at a time for extended weeks. Let me know if you would like to speak by phone, No problem.
TheRaven Blockhead
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Blockhead,
Yes, there are a number of similarities between us. I've got 6 years on you at age 62. Came down with the PMR just over a year ago but wasn't diagnosed as PMR until about November 1st.
Your onset sounds like it happened very quickly where mine was a gradual worsening over 4 months time. I was having a very high stress time and I really think that's what kicked the PMR in to gear.
I do a lot of physical work at my job (contractor supply company - pipe, pumps - lots of heavy stuff) and can still do about 90% of my pre-PMR abilities but when I run out of energy for the day it's gone - no resting for a little bit and getting recharged. Definite fatigue issues even when the Prednisone is dialed in perfectly.
Do you still have the nerve issues with the hands besides the swelling or was that short term at the start of it all? In all my readings on this forum I don't recall anyone discussing something like that. Swelling and pain of hands, yes. Nerve issues, not that I recall.
My rheumy had me taking Pred only in the morning but it was like I'd run low before morning and would be hurting every morning from 3 to 8 or 9 when the morning dose would kick in. I finally asked about splitting the dose and he agreed. That has worked well for me. Currently I take 10 mg at 6 am and 5 mg at 6 pm. I see you mentioned that your doctor "is going to downsize my use of Prednisone...." Just because you're splitting the dose doesn't mean you are downsizing it. You're still taking 20 mg in 24 hours.
Right now I'm fighting a bit of a flare up. About 3 days ago my shoulders suddenly started hurting along with the biceps and thighs. About 6 hours later the beginnings of a cold (drippy nose, congestion, etc) showed up. For me, it is like the PMR knows the cold is starting before I do and for a while the prednisone dose isn't enough. If it gets too bad I will bump up my pred dose to 20 for 2-3 days and then drop back. I have heard about that trick from the group here, that it's safe to do that for just a few days without having to reset your whole reduction schedule.
It took some time for me to understand that the Prednisone is just for controlling the swelling and pain issues. It's not going to cure the PMR. My rheumy never spelled that out until I asked him directly after hearing that from Eileen, our forums resident authority who's information and discussions I highly respect. For me, that was the biggest thing - understanding that it's going to be a longggggg pull, that the PMR is going to be my friend for many many years most likely. I'm just focused now on keeping my dose at a level that keeps swelling and pain low or gone and it's been pretty good.
My day to day issues:
Still dealing with swelling of the toes and pad/ball area of the feet. Not painful.
My sleep cycle is anything but regular because of the Pred. By the way, I really wouldn't recommend taking the Pred dose before bedtime like your doctor wants you to do, unless you've had no problems with sleeping since going on the Pred. Taking it 12 hours apart has worked fairly well for me. However, with this small flare up currently, my sleep cycle fell apart again. I've been up for almost 24 hours currently. Doctor pushes sleeping pills but I hate 'em and just won't do it, so that's on me.
Fatigue. As I mentioned, when I'm out of energy, that's it for the day. It's not like I'm going to go mow the lawn or tackle projects after supper like I always have. The fatigue won't allow.
Blood sugar. That's the one that concerns me the most. The last appointment with the doctor I had a full bloodwork and darned if the blood sugar numbers hadn't spiked up into the pre-diabetic zone. That would seriously tick me off if I end up diabetic because of the Pred. However, I know there isn't any other proven option besides Pred.
Paper thin skin. Seems like I leave a trail of blood wherever I am at work or home now. Takes nothing to cut or bruise the skin, thanks to Pred.
Hope you get relief with the hand issues. Sorry to be so long winded. I have a tendency to do that on a forum. The penalty for being a good typist I guess...lol. Yes, if you do want to talk sometime just give me your number and I'd be fine with calling and discussing the joys of PMR further. It's likely going to be our close, personal friend for a long time anyway, right?
Almost 6 a.m. - time for the morning Prednisone breakfast!
Blockhead TheRaven
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Raven,
Thanks for the info. Yes My Dr. Split the dose but issued 5 & 1 MG pills to wien off of it 1 MG at a time 1MG less per week.
Crazy to gear people have this for years! I'm not looking forward to this. There must be some underlying cause for this. I do beleive as stressfull times arise weird things can happen to us but I will continue to work to a solution, especially for my hands whereas I gave limited use.
There my tools, need them really bad.
Dan
Once I learn how to send my # personally, I will Thanks!
Anhaga Blockhead
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Blockhead, you can click on the little envelope beside TheRaven's name and send a private message that way.
You need to stay at a dose which helps your hands. Once your hands (and the rest of you) are feeling better, please introduce a very slow taper, and look after yourself. You will nearly certainly have to cut back for the time being on the amount of guitar playing you do, and must definitely always give your hands a period of rest to recover between activity times. This will improve with time. PMR can be a long journey, but with careful management it gets easier and you won't always be in the same position as you are at the beginning. Think about it - what if you had a broken limb? That takes time to mend. PMR is more subtle in a way, and you have an invisible disease, but you still need to look after yourself and do whatever it takes to preserve and restore your health, even if that means not doing some things for a while. When you are feeling better you could consider consulting a physiotherapist who has an understanding of the limitations of PMR and perhaps get some appropriate exercises to help maintain flexibility and rebuild strength.
Blockhead Anhaga
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