Posted , 15 users are following.
I have had a really bad 2 days. Just want to sleep. I have not left the house. I was at 10mg. was dropeed to 9 -10- 9 -10. I feel like crap. So very depressed. So angry From all i read here sounds like we will never be who we were. So Sad. Can dropping the predisone be making me feel like this? Any good advice needed. I do not mean to bring any one down. thx
1 like, 30 replies
We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.
pat38625 karen81902
Posted
Hi Karen, the one thing I have to say is You Are Not Alone. I can only speak for myself. There is light at the end of the tunnel and sometimes the tunnels are not as long as we see or think or feel. You can be angry but it is only wasting energy that you don't have at present. If you can please google "The Spoons Theory" and I hope it will give you some comfort. I do understand, I was diagnosed November '14 and was put on 20mg of pred. I am now reducing from 3.5mg to 3mg. My life has changed so much and maybe you are grieving for the loss of the person you knew before PMR.
It's a totally different way of living and being but there is hope, always hope. I cannot do the things I used to do and I mean a simple walk. I can walk with my son and maybe hold on to him when I need to because the calf muscles pull. Before PMR I could have walked 4 miles and not a bother. Karen you will get through this, we all do, you cannot go round it or over it, you just gotta go with it. You are not bringing me down but reminding me of what it used to be like in the early days with PMR I think there are parts I don't even remember but I know that I was one step away from a wheelchair. Now I can walk with a little help, I can drive a short distance, I can cook and Im so grateful that I can. Just be kind to yourself, you will feel better and tomorrow is a new day. Chin up girl, put one foot in front of the other and you are upright and that's where it starts. Hope you feel better real soon and please keep in touch. Regards Pat
karen81902 pat38625
Posted
Just a sad few days, tomorrow I will be better. I will start with all my spoons. I will see how many I have to let go of. Maybe I will use plastic spoons and really do this not just in my head. Very interesting read. Thanks for sharing that.
pat38625 karen81902
Posted
Ah sure I'm talking with a different Karen now lol. Sometimes it's just a few words can make a difference in our mental state of mind. It is not always plain sailing as we both know. Tears and crying is therapy. I felt sad on Tuesday and I honestly didn't know why - but I allowed myself to go through it and shed a few tears. Yes spoons is a brilliant way of looking at PMR and other auto immune disorders, I think your plastic ones is a brilliant idea but I'm sure we would still run out of them whether metal or plastic. Just always remember you cannot give away what you don't have. Save some spoons for yourself. I think you were running on No Spoons and that can get us all down. So glad you are feeling a tiny bit better and it's going to grow from there. You will feel a lot better tomorrow, so I am gonna go now cos I need to keep some spoons lol Great that you had the strength to come onto the site and type. WELL DONE YOU lol Regards Pat
jenny758 pat38625
Posted
Thank you for sharing the spoons theory. It brought tears to my eyes. I dont talk about my illness with friends. I did tell close friends about the illness when I was first diagnosed. Prior to diagnosis I was at the point where I felt I was going to have to hire someone to bathe and dress me. I am a 58 year old divorced female with no family nearby. Thankfully I was diagnosed this past April n the prednisone gave me mobility. Went down from 25 to 20 mg this past week. First couple days were awful but body seems to be adjusting somewhat to lower level although pain in shoulders is a little worse . I know from reading on here should probably have reduced slower n next reduction will b only 1 or 2 mg. upset with my weight gain and inability to sleep b/c pred. But thankful I can walk and dress, etc. since friends see me moving without shuffling they assume I am over this illness, but as everyone on here knows, we are not over it. A few friends have asked me out to dinner, and this is where the spoon theory comes in. I have to decide if I can 'save' enough spoons during the day to be able to dress up and go out in the evening. I will ask those close to me to read about the spoons. Thanks again for sharing.
pat38625 jenny758
Posted
Hi Jenny, it was someone on this site may Eileen suggested to read about The Spoons Theory. I was diagnosed with ME 15 years ago and that was a struggle but nothing like PMR. I went undiagnosed for a while and I do believe I had undiagnosed GCA, I was putting everything down to ME. It took me 2 and a half hours to shower and get dressed for an 8 minute drive to the drs. I could not turn around in bed, it took about half an hour to turn. The only way I can describe PMR for me was that all my muscles and bones had fused together and formed cement. It was truly dreadful. I have one son living at home but I could not ask him to do anything. I felt the same, that I would have needed someone to do those most personal things, I don't know how I managed but like yourself I did. People don't understand ME so they will hardly understand PMR, I really don't care. If I am out during the day then I don't go out at night and vice versa. Also I cannot go out 2 days in a row, So we all need to pace ourselves. Trial and Error I'm afraid. Anyway I'm logging off, I have to save me spoons lol Isn't it great that we can share and smile. We are Blessed. Regards Pat
jenny758 pat38625
Posted
Yes, so nice to read about others n share our woes as well as our triumphs n joy in being able to do small things. So nice to know I'm not alone n yes, I, too could not move in bed. I know the cement feel. Couldn't shave my armpits for months lol. Arms just wouldn't lift n deodorAnt was hit n miss. Lol. Yes, I am thankful I can do those things now. N every night I thankGod n the universe for all my blessings.
jeanne333 karen81902
Posted
Just hang in there. Yes life as we knew it is over for most of us. i guess a few have beat the PMR and acually got off steroids, but i think the odds arn't in our favor. Im having trouble getting below 20mg, so your are doing better than me. You may have to go back up to 10 or whatever mg you felt the best, and do a slower taper. Most of the post here say it is a really slow taper down from 10. We just have to keep trying and accept our limitations, and remember not to overdo, when we do feel better.
Anhaga jeanne333
Posted
Actually, I believe most people do get off steroids in the end - it just takes longer than any of us would like. Meanwhile we do what we can to maintain our health and appreciate the relief of pain which pred gives us.
karen81902 Anhaga
Posted
Silver49 Anhaga
Posted
I would agree with you, Anhaga. I cannot believe what I am able to do now. This time last year I couldn't even manage to walk any distance without pain and that was on the steroids, though I still have to pace myself. It is a little frustrating that I am unable to do the same tasks in as short time as I could prior to PMR. I then stop and remind myself that I have come a long way though still on 8.5 and reducing. It seems prudent to abandon the idea of reducing further at present as we have our grandchildren staying for most of their summer holidays. It does get better, though if someone had told me this last year I'm not sure that I would have believed them. We are all different, react to medication differently, lead different lives and tackle illness in our own individual way but we all have PMR and that is common ground. I think pacing and acceptance are the most useful words to bear in mind at present. Best wishes for everyone's progress on this journey.
joey_12298 karen81902
Posted
It is soooo common to get depressed with PMR. I am presently reducing down to 9mg from 10mg of Prednisone for the second time. Had a hard time at 7mg but this site has helped me understand what I had to do to get past that 8mg wall. I barely slept in 2 years. Found a new doctor. Was beyond exhaustion. Deprsseion was getting terrible which was not like me. My new doctor put me on Hydroxyzine HCL 50mg (white tabs), once every evening as needed for anxiety, insomnia & itching. I had anxiety only when trying to sleep - go figure? Strange itching only on my feet. Once, I was well rested from finally getting some sleep, everything changed for the better. I have joined a gym and am now slowly forcing myself not to just sit all day but to move to improve. Seems to be working. I walk on a treadmill 2 miles, sometimes more per day & am now trying to use weights because I have lost a lot of muscle tone. When I get home from Gym, I rest and the best part, my depression is leaving. I can see a light at the end of the tunnel. I will not let anything stop my life even though it is different now. So don't you either. Do what you have to do to get over this hump. And good luck. You will be in my prayers.
jeanne333 joey_12298
Posted
FlipDover_Aust joey_12298
Posted
Well done Joey, I feel 'proud' of you, if that's possible!
Tastyron joey_12298
Posted
That's the first time I've read about the itchyness. I get itchy (feet, head arms) but never thought of it as a PMR or Pred thing. It lasts for about half hour or so before it subsides. Just another thing to put on the ever growing list of side effects. :-)
nick67069 karen81902
Posted
Karen, I learned to expect troubles during taper, especially in the first week or so. It seems that the body complains about the change, I feel more exhausted and have to make conches effort not to overdo things or try any new activities. It usually goes away about half way thru the DSNS steps. It is important to listen to your body and see if the "new" symptoms are getting better or not during that period. If the symptoms are not getting worse, I assume it is steroid withdrawal and continue with taper.
About the spoon theory... I noticed soon after being diagnosed with PMR that moving regularly ( no sitting ) and stretching helps me to get thru the day. Since then I try to at least walk 3 times ( morning, noon and evening) and do 15-20 minutes of gentle stretching of the muscles that hurt or are stiff. To use spoons theory, I honestly feel that this buys me extra spoons for that day. And it seems that next day I can do more. Recovery and getting as much of our life back is my highest priority. If you focus on it... you will be pleasantly surprised how much better it gets over time, just don't give up... never.
dea13 nick67069
Posted
EileenH dea13
Posted
It's what many people on the forums call the "Dead slow and nearly stop" approach to reduction that you will find in the replies section of this thread:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
It is self-explanatory so I'll just explain here that it slows down the rate of reducing from the higher to lower dose so that the body doesn't notice it as much (it avoids what is often called steroid withdrawal rheumatism whch is so similar to PMR that it is often thought to be a flare) and also allows the right dose to be found more exactly. It is rheumy-approved, it is being used in a clinical study.
dea13 EileenH
Posted