Posted , 9 users are following.
Went to see different Dr today as pain still in neck and back ,now returned to upper arm. I had managed to get down to 7mg but thought it wasn't enough,just needed a bit of medical input. He told me to increase to 10 mg for a month then reduce to9mg for a further month then I should see a Rheumatologist.He did mention methotrexate,I've not heard very good reports for this. What do you think?
0 likes, 15 replies
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connie28112 kathleen21605
Posted
I saw a question earlier today about methotrexate... I was on 6mg kast year and my Rheumatologist wanted me to use methotrexate to try to reduce further. The short story is - it did not work for me. However, I have several friends who use methotrexate to complement treatment for RA and they tolerate the drug well. My sense is, for ME, I am glad that I tried it.
I took methotrexate by injection and folic acid in the form of leukovorin, both of which are supposed to lessen side affects of the drug but I had very uncomfortable stomach problems. In addition, it did not help with my pain. But our bodies are different ... it may work for you.
I would definitely consult with a Rheumatologist before making a final decision.
Connie
kathleen21605 connie28112
Posted
Thank you for your comments well received I will have to wait for rheumatologist advice then make my decision. Since I posted have read lots about it and it didn't sound very good. Just have to wait and see.
Michdonn kathleen21605
Posted
Kathleen, every case and individual is different, I think you should listen to your body. Take what ever dosage is necessary to feel the same the same way you before the flare. Soon as you are feeling the best, if the duration is not too long, reduce back to the level you were tapering to. Then start a DSNS method taper. I don't taper if not PMR pain free. I increase my dosage quickly on first sign of a flare. Good luck on the rest of your journey, try to think positive and smile. I believe it helps!??
kathleen21605 Michdonn
Posted
Thank you for reply I can honestly say I have not been pain free since original dosage at the start. As I said back to 10mg so must give them a chance I think the arthritis I have in various places doesn't help. Hopefully will get some good advice when I see rheumatologist. Long wait.
Abella-Linda Michdonn
Posted
EileenH kathleen21605
Posted
If it works and you have no side effects it may well be worth trying. It is good for some people, not for others. And you don't know until you try.
Abella-Linda kathleen21605
Posted
Hello Kathleen please go back to your own Doctor and insist on seeing a rheumatologist as soon as possible.. It isn't good that you are struggling like this and for you to wait another month before being referred must seem like a life time. I understand how busy all the healthcare professionals are but no one but you knows your pain and worry, so please make your appointment as soon as you can.
Oh dear I do sound bossy but I am not really.. I do understand your pain and worry as I too have been very poorly and started off by having to take 60mg per day of steroid, I am down to 10mg now. My rheumatologist has been excellent and I am lucky enough to have a Doctor who has an almost 'open door' policy for me.
So what I am trying to say is get your rheumatologist sorted and keep hold of a Doctor who will listen - you don't deserve to be in pain.
Do hope that I haven't rattled on too much - take care
This is just my opinion because of what I have been through and am still coping with.
kathleen21605 Abella-Linda
Posted
Thank you I have tried everything to get my rheumatologist appointment but I still have to wait until July. Even the PALS at the Hospital has tried to no avail. I feel totally let down by the system. Even have to wait for blood test til end of month. All I can do now is wait but I will complain when I eventually get seen. It feels like all i do is moan but that doesn't help anyone.
EileenH Abella-Linda
Posted
I don't know where you live but unless you have clear signs of GCA you are unlikely at present to get an emergency referral to a rheuamtologist in the vast majority of hospitals in the UK. It is sad and wrong that patients have to wait but there simply aren't enough specialists to go around - supply and demand rules.
And if you are in the USA - it isn't much different. I know people who have waited months and still travel 3 or 4 hours to see a rheumy who takes their insurance.
Abella-Linda kathleen21605
Posted
Hello Kathleen I am so very sad for you but keep positive it will all be sorted out for you. But the waiting is such a problem. I was lucky because I was already in the hospital system as it was thought that I had liver cancer as my inflammation levels were all well over 200. But my liver wasn't coping with the inflammation being generated because of the PMR & GCA and I was then referred to a rheumatologist within the same hospital.
If its any help to you I have found out about the following:
A book which is written by Kate Gilbert its called
Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. It might be worth a look.
Plus I have also found out about local monthly or bi-monthly meetings for us with these problems. If you google the condition and meet up groups you should find them. Hopefully there will be one in your area
Good Luck
Abella-Linda EileenH
Posted
Yes I understand all that you are saying and the poor Doctors and Consultants have such a lot on their plate.
You will see in the message I sent to Kathleen how once I was in the system at the hospital I was quickly referred to a rheumatologist.
I wont write it all again Eileen as I know that we all share messages.
kathleen21605 Abella-Linda
Posted
EileenH kathleen21605
Posted
The book is available from Amazon both as an ebook and a real one.
There are several support groups in Kent:
http://www.pmrgca.co.uk/groups/
EileenH Abella-Linda
Posted
You were lucky - the normal procedure now is that a new referral must be made by a GP, not by the hospital consultant. It's a mess...
Abella-Linda kathleen21605
Posted
Good Luck with everything
All the very very best to you