Feeling Miserable
Posted , 16 users are following.
I've had PMR for 6 months now and have been doing quite well having started at 20mg Prednisolone and am now down to 8mg. My main problem is the side effects from the steroids and they are really getting me down. My eyesight has got rapidly worse - I'm now awaiting a cataract operation and don't feel safe driving long distances any more. I have also developed carpal tunnel syndrome in my right hand, which, because of the constant pain, tingling and numbness in my fingers makes writing, using a knife when eating and gripping the steering wheel when driving, very difficult and uncomfortable. Even tapping out a message as I'm doing now, is painful. I have a physio appointment booked for the 29th which my GP says should help. Apart from that I am still plagued by extreme tiredness, so every day is a real struggle and a major effort to get things done. I just want to get back to being the person I was a year ago - will that time ever come? I have a colleague who has had PMR for 2 and a half years and is now off steroids completely but she says she never had any side effects whilst taking them, regularly walked 5 - 6 miles each week and generally led a busy active life! I believe this is rare but how I wish I was one of the lucky ones like her. However, it's great to be able to come on this site, have a moan and know you'll be understood, whereas those who have never had the condition don't seem to have a clue! 😦
1 like, 62 replies
Loulie fran2498
Posted
I have had cataract surgery in both eyes and cannot recommend it highly enough. Amazing results. I had it before developing PMR, however, but as long as your surgeon knows you have PMR should not be a problem. I have had PMR for three years now, and like you, prior to this I was as fit as a flea and full of energy. I am just a wreck now and can barely haul myself around with constant exhaustion. I am noticing one common thread in some of the posts that when people first have PMR they manage to reduce down fairly speedily to 5mg but then when they get a flare (as mostly they will) they go back up and it is much harder, it seems, to reduce again and many of the side effects seem to kick in with the 'second' dose. That is just an observation, and one that was true for me. My advice (and one I am following this time) is to reduce very, very slowly even though you want to reduce the Pred to try to alleviate some of the side effects. I guess you know about the DSNS method?
Good luck.
fran2498 Loulie
Posted
I have read about the DSNS method of reduci g but can't remember exactly what you have to do. Could you remind me please. Thank you.
EileenH fran2498
Posted
All here:
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
pebbles01 fran2498
Posted
Its been awhile since I have posted anything on the site, but saw your message and knew just what you were going through. I have had PMR for quite a while now and due to the steroids I too have had eye sight problems and have had two cataract operations recently. I am so thankful that these operations are available as they have given quality of life back to me, amazing!!
I was on 30mg and am now down to 7mg and was doing well until last weekend and for some reason had a flare which took the wind out of my sails for the whole week. I work hard all week which is very difficult and do get very very tired but I cannot let it beat me. Just stay focused and do what you can, sometimes you just have to push yourself rightly or wrongly. Try not to measure yourself against someone else we are all different. We all get down at times and I so want to be off the steroids as I fear of what longtime use is doing to me, but without them I would be in such a worse state so I thank modern medicine for giving me a life it could be so much worse and I think of all those people who are so much worse off with other condiitons. Try and stay positive. The eye ops will help you and may make you feel so much better. |Good luck x
fran2498 pebbles01
Posted
Tinaj fran2498
Posted
Fran, I too have had PMR for 6 months now. Me being a nurse refused 15 mg pred daily. I started with 5mg. My rheumy was amazed how well the low dose worked! My CRP went from 16.8 to 3.5! Almost normal! My pain was 95% gone!!! The problem was after 1 month on the pred I was miserable! I had shortness of breath, extreme fatigue and episodes of being hyper, chest pain, irritability, sleep disturbance and just felt out of sorts!! I tapered myself off the pred in 2 1/2 months. I'm taking anti-inflammatory and immune building supplements and foods. In addition I take 1- 15mg Mobic every 4-5 days to relieve the pain! I know the NSAID's can shut down the kidneys! I think I'm safe taking so little. I still have 1- 1/2 more yrs. before I retire at 66! I'm banking on this PMR to burn itself out in 1-2 yrs. as the MD's say!!! I feel like my life is on hold. After working all day I'm extremely fatigued!!! I think your wrist pain is from the PMR! I have pain from my neck to my knees!!! I also have burning pain in my rt. side/groin area! and extreme rt. Knee pain! I do get relief for a couple days after taking the Mobic. This PMR is really the pits!!!! I hope you feel better soon.
fran2498 Tinaj
Posted
Anhaga Tinaj
Posted
I just looked up the possible side effects for Mobic and when all is said and done I don't see that it's any improvement over pred, especially as you had such a good response regarding pain relief at the 5 mg level. A pity you had such severe reactions to that low dose of pred.
Tinaj Anhaga
Posted
Hi Anhaha, I only take a 15mg of the Mobic every 4-5 days. I think it's much safer than the pred. Plus you can't take pred that way. Pred is just so toxic!
Anhaga Tinaj
Posted
Well, as they say, different strokes for different folks. I'm happy to be on a gradually decreasing dose of pred and feeling no pain! Don't feel like my life is on hold, pred gave me back my life. But there you go, we all make our own choices, hopefully what is best for us. It will be interesting to have regular updates from you as your journey sounds like it's going to be different from the one most of us are on. Cheers!
Tinaj Anhaga
Posted
Hey Anhaga, I just want to thank you for your comment re: Mobic. I googled it and boy was I shocked! Before I just looked it up in my drug handbook. It was just like every other drug and their side effects, nothing remarkable. When I googled it I learned of a few symptoms that I have been experiencing like increased appetite and I wasn't sure but I do think now I was losing excessive amts. of hair!! Thank God I have thick hair! I'm definitely stopping the Mobic!! I can't thank you enough!!!!! I read a lot of your blogs and think you're really great! You really help a lot of people here. I don't know what I'm going to do for the pain? I do put up with a lot of pain but I do need some relief!!!!!!
Thanks again,
Tinaj ??
Tinaj Anhaga
Posted
Hi Anhaga, I will definitely post my journey through this awful PMR!!!! You're so fortunate to be able to tolerate the pred and being pain free having a normal life!! That's really great!!!
Thanks again!!!
Tinaj ??
Anhaga Tinaj
Posted
In some ways I guess I am lucky, but it's also been a lot of work. I think the lucky part is that being retired I can take time for myself and look after my recovery, as well as living in a country with reasonably good medicare. I'm getting pretty old and feeling it, but nothing like the pain of PMR which when I think about it, which isn't often, was so horrid and disabling. I can stand a little arthritic creak or so! As for pred, I think I'm rather sensitive to it, but it certainly gave me the pain relief I needed. I had the classic response which we all want, and I think my so far successful taper is due to the expert guidance and advice of those on here and my good fortune to be able to benefit from some other therapies. Best wishes to you, Tinaj.
Anhaga Tinaj
Posted
Tinaj, PLEASE don't do anything on my say so, please check with your doctor!
nick67069 Tinaj
Posted
Anhaga nick67069
Posted
Nick, Tinaj is the person who started at 5 mg according to her post above. So if dosage was cause of her problems, it wasn't due to it being too high.
Tinaj nick67069
Posted
Hey Nick, I started at 5mg! Was amazed it took 95% of my pain away!! After 1 month terrible Side effects!! I'm just really sensitive to meds!!! Don't take them very often. Thanks for responding. I don't know what I'm going to do when the pain returns full force tomorrow. It'll 5 days since I took Mobic 15 mg. Thanks to Angaga for informing me of the drug and then realized it was causing more side effects. (Losing hair and increased appetite). I'll keep everyone posted!
Thanks,
Tinaj
nick67069 Tinaj
Posted
my bad. I did not remember Tina's post and was commenting in general. Some people react really badly to prednisone. I have read on this site or similar that ( at least in UK) they also offer prednisolone as an alternative. Although they are simmilar medication, some people react better to it. ( Prednisone converts on the liver to prednisolone, which body can use).
EileenH nick67069
Posted
They don't offer it as an alternative as such - every country has their list of drugs they use regularly and so they are able to negotiate good prices for large volumes of stock. In the UK it is prednisolone, in the US it tends to be prednisone or methyl prednisolone (Medrol)and here in Italy it is methyl prednisolone. I had no problems on prednisolone but awful ones on methyl prednisolone - so I'm now on Lodotra which is a special and expensive form of prednisone - again, no problems. There is no choice, is the only other oral corticosteroid stocked.