Has anyone found any relief from pain by the use of rose hips. I am in a lot of pain RA > 20 yrs. No meds as rheumy says RA burnt out, and non steroidal stopped due to ulcers. So on paracetamol and codeine only.
Also has anyone else found pain relief in alternatives. Am on levothyroxine and prednisalone.
Am just so fed up with constant pain I don't know what else to do. Been round the block with morphine patches anti-depressents etc. none sorted pain just messed with my head.
If you still have inflammation why does your Rheumy considers it's burnt out siskin? I'm pretty sure that if you've pain & inflammation this would indicate there's disease activity, unless you're taking the pred for another issue. Are you happy with his thoughts or are you thinking along the same lines. If so it might be an idea to ask your GP if he can refer you to someone else for a second opinion.
I'm afraid I can't help regarding alternative pain relief as I haven't tried any, fortunately I've responded well to the ones I take though I know it can be a real problem for some, particularly so when ulcers are concerned & you're not tolerant of the stronger pain relief. Hopefully someone who's tried rosehips will give their advice. I remember my mum giving me Delrosa but I can't imagine it was for inflammation!
hi nomoreheels thank you for your reply, rheumy just examined my finger joints and said Ra was quiescent, but because I was complaining of shoulder pain as well as allover pain she decided I had PMR. When I mentioned my Mum and brother had PMR that confirmed or her tha it waqs PMR I had. She put me on 15mg pred. Which (now I know) from PMR site was much much too fast.
It now seems that the shoulder arm pain is due to disintegration of rotator cuff and severe erosion of the shoulder. X-ray and ultra shows this.
I have discussed this with GP who has referred me back to rheumatology with a different consultant. I go on the 12th May.
I am certain this is RA pain it feels different to the others. My veins feel has if hot oil is coursing through them. Same as when I was 1st diagnosed. 19 1994. It is eased with neurofen which I take if I have to go out otherwise I can't function.
I was initially on sulphasalazine and methotrexate, nothing else in those
days.
A lung x ray showed I had fibrosing alveolitis so even when biologics came in they wouldn't let me have them. It now turns out with CT scan I do not have alve. but bronchiectasis. So a wrong diagnosis has, I feel, had a very negative effect on my life.
I think rosehip syrup, was given to children as it is high in vit c.
I have decided to try the rose hip to see how I go.
Regards, siskin.
Just re-read my response the much too fast refers to pred. reduction protocol. I seem to have lost the plot to-day. :-((
That's good you're being referred back to a different Rheumy. The previous sounds to have a somewhat lazy way about her, especially re jumping on family history of PMR when you have obvious persistent swelling & confirmed rotator cuff/shoulder issues, as I understand it PMR isn't destructive (?). I hope the new one requests his/her own testing & imaging so you're looked at afresh & that's he/she is one who listens to the patient rather than relying on blood tests & imaging, having had a wrong diagnosis before I feel this is even more important for you & sure you feel the same.
I hope the rosehip helps & good luck for the 12th. Will you let us know how you get on?
agree with you about lazy attitude, but I did not know about shoulder probs until about 5 weeks ago. ortho surgeon says I need a reverse shoulder replacement.
Saw rheumy last Sept. she made a new appt for this Sept. then I got a letter to say Sept. appt. cancelled "on consultants instructions" no reason or alternative date.
I will let you know how I get on on the 12th.
No PMR is not destructive as far as I understand it. BUT rheumy did not warn me about the possibility of Giant cell artiritis which is very dangerous and can lead to loss of sight, nor did she advise me I should carry a steroid card.
When my son was with me she was all sweetness and light and same when a student was in the room, but when on my own she preferred to fiddle on the computer.
Regards siskin.
Definitely sounds like you're doing the right thing, not only lazy at appointments but also in writing letters as well, you deserved an explanation why she'd cancelled not just that they were her instructions. I would think this appointment won't come soon enough. It might be an idea to write down your concerns then all points are covered, being an initial consultation it's probably a double appointment so take advantage of that! I'll look forward to your update.
Yes will take your advice and will also let you know outcome. Regards.
Hi nomoreheels, I am a bit late in letting you know how I got on with new consultant.
I got on well and was taken notice of. The lady I saw is not a consultant per se. but a lot more than a registrar. She examined me well and read my notes and believes my RA is active still.
Even called in her boss so they could discuss it all.
A whole raft of blood tests, not got results yet and she promptly arranged for Dep M
injection there and then. Depo usually has me dancing in the aisle but this time no response.
She has decided I should go on Humira, I have mixed feelings about that. So I see biologics team on 4th June.
As my son said at "last you are being listened to"
I agree with your son, but nobody should come out of a consulation thinking they've not been listened to should they? I'm really pleased that this new person did though & used the time well. Could she maybe have been an Advanced Nurse Practitioner?
What a letdown that the depo IM hasn't worked. You haven't been overdoing things have you, or is that a daft question?! I know others have said that the less you do the quicker the relief, or maybe they didn't give you enough? I would tell your team though, please don't suffer more than is necessary, especially so now you know that the RD is active.
Many have done & are doing well on Humira, hopefully if this is the one the biologics team suggests they'll explain why they consider it is worth trying.
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