Well I had my rheumy nurse appointment 2 days ago. All went well though she did not much like that the helpline nurse put my pred back up to 15mg as I was flaring. She asked how long I had been on the pred and when I told her since June she said "oh dear". Now we all know that it is long term with PMR. She has kept me on 20mg of MTX as only had 7 doses so still got to kick in properly but she increased the folic acid as my hair is thinning really badly so instead of 1 x 5mg weekly I am now on 5mg 3 times a week and have permission to increase it to 6 times a week if not much change.
She said to stay on the 15mg til after Christmas then try to reduce again which I will do but if I flare then it will be back up. She is also thinking as I have not had much relief with the MTX yet that I may have to change to injections of it. I am fine with this as I had to inject Fragmin daily when pregnant and I am assuming it is only once a week with MTX.
I showed her the swollen muscles in my neck and top of shoulders, they are clearly visible when I flare. Of course this is not RA so again they are having to agree that it is PMR and she says my painful toes is also PMR related. So if they are agreeing that I have PMR then why are they trying to get me off the pred when they know that is the treatment for it?
OK I don't want to be taking 20 odd pills everyday but if it lets me be pain free then so be it.
Last Saturday I had a dodgy tummy making me go to the loo often, I assumed it was from the chip shop meal we had the night before. The nurse asked if I had had sickness or the runs. I told her the latter but it only started 4 days previous so she doubted it was the MTX. She suggested that instead of Naproxen for pain relief to take paracetamol 4 times a day (another 8 pills) and said that they would rather me do that than be on pred. Am I missing something here? Does paracetamol reduce inflammation like pred? I didn't think so.
Anyway I still am having pain and running to the loo a couple of times a day so immodium has been had this morning, though not sure what is causing it.
Off to the hairdressers this morning and hopefully she will make my hair look more like it was before MTX and hope I can manage to sit at the bowl for it to be washed without neck pain.
Hope none of you are having breakfast when reading this but if you are I am sorry lol
Keep smiling
Sue
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Sue8
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This is a very late reply to your blog I know, but having had probs earlier on today with getting back to you, this is my last attempt before my system self implodes!!!!! Our admin team seem to have been playing 'fast and loose' with members in order ,I'm sure, to keep the site safe, but it's been rather frustrating.
However, I'll forgive them for losing my reply which took at least half an hour to compose, but security is all, so I'll stop moaning and get on.
So sorry you're still having probs with treatments. It must be so frustrating, but as usual, you seem to be coping with your renowned ability to face all set backs with bravery and humour, even though I guess we mostly know that a few tears are shed along the way.
'Long term PMR'. I don't think you've reached that stage yet Sue. That's more my province - nearly 2 years and not better yet? my young tranee rheumy said on my last visit. I could have strangled the little--!"£$%^&!"£$$^ DARLING. Thank heavens I will see my usual specialist next week, on my birthday. Won't that be a treat? I hope so!
The folic acid will sort out your hair probs as it is the standard treatment for thinning. Hope your visit to the hairdressers went well and your neck is not sore. I find spraying hairspray into my hair after washing gives extra body and has a thickening effect without stickyness. I've used this trick for years. I use Silvikrin natural hold as it has a gentle spray and brushes out easily. Plus it is reasonably priced.
You're right about paracetamol - it can never compare with pred in it's ability to combat inflamation, but it is often used as a 'back up' with pred for those who can take it. Try it, as it may stop the 'runs' you are suffering now and will take some of the pain away, I'm sure.
To suggest that paracetamol could be used instead of pred is ludicrous to say the least. The reason why NSAIDS are not used long term is because they would all do massive damage taken at full dose. Even at full dose, none could combat the awful pain and stiffness of middling to severe PMR.
For myself - I've just reduced to 9.5mg from 10mg of pred 7 days ago and am feeling pretty good. Have managed to avoid any feelings of 'burn out' so far, although today I've had quite bad pain in most of my body because I've completely disregarded my own advice that I give to everyone I talk to on this site, and over done the physicals completely. However, 2 doses of ibuprofen and a really hot shower have sorted the pain.
aww Pats bless yer. I felt pretty good yesterday and hoovered my stairs and landing. I had pain in my hand after but not much else. I was fine after the hairdressers also. But getting up this morning was a little bit of a struggle and my left hand/fingers are painful and my neck a little stiff but not doing much today so hopefully all will be good.
I am on month 9 of being diagnosed with PMR but only 6 months on pred, even though I am back up to 15mg I still feel it's not enough but will carry on til after xmas unless I flare. Here's hoping I don't.
This will bethe first Christmas that I am not having loads of my kids and their families around. On xmas day it's just the 6 of us who live here then my eldest is up from London with his wife and son so very small for me. They have also been warned not to expect my usual standard as I am not going to town on food. I have not even planned a get together for boxing day like I usually do. It's about time my older kids started to think of us and offer to have us but that's their choice. I think they will see a different xmas this year as I have always done it and to be honest they still don't get that I can't do it. I suppose it's hard for them as they don't expect their mum to not do what she does best lol. But they will have a rude awakening. My hubby keeps telling them but it's in one ear and out the other.
Any way I wish I could have ibuprfen instead of naproxen as it always helped me in the past but they don't want me to cos of the diabetes. I might ask again.
Right best get in the shower and eat to have the start of my many meds lol
Do look up paracetamol on the internet. From what I recall there was recent research that showed it caused headaches when used continuously so was recommended now for 2 weeks only!! You don't want to add more to your complexities. i wish your nurse could be "in your shoes" for a week then she might give your situation a lot more serious thought.
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feeling really vulnerable and so fed up
I was feeling so good. Then... WHAM!
Can I hope for abdominal measurement reduction with Pred reduction?
So the GP upped me to 20 mg
Follow up appointment at GP
