new to this group with severe RA

Bones, joints and muscles
1

Morning to all.  New to this group and hoping for some great responses.  I'm a 66 young female with severe RA.  I can't take any of the shots and most meds do to my liver, infections and most other drugs.  I am on double dose of prednisone right now, plaqinaul and just started taking an old med called sulfazine (three weeks so far)  I do take oxicodone for pain.  Nothing is working right now, severe pain whe I wake up and during sleep.  Sounds like everything I've read here so far.  My husband has to help me dress some times, and walking is the pits, wrist, fingers hands, feet and shoulders.  Well they can't take my brain or heart.  try light excercise but hard and I'm going to a new RA Dr. and I like her,very kind.

Any ideas I would love to here them, I want to sew but the energy is not there.

2

Hi Bárbara, sorry to hear that nothing is working . I know how that feels . I'm on Enbrel and so far is working good. Have you tried food elimination ? Some people swear that all milk product are bad for RA and some say to avoid simple carbs . I think if you have not tried is worth a shot . I wish you the best and keep us updated on how you are doing

3

Hi Barbara.I told my consultant I have trouble having good sleep without waking up all time with pain and he prescribed me Amytripyline which is very good.I am on similar meds to you..sulfasalazine prednisolone and pregabalin and amytripyline.

Ask about trying the amytripyline and also the pregabalin which is for nerve pain etc.

It does drag you down all this pain n tiredness.Wish you luck

4

Hi Barbara

nice to hear from you! But sorry you are having such a rough time. How long have you had RA?

i m 64- diagnosed 2 years ago. I too take sulfazine, but also 2 other DMARDS so don't know which ones are working. But now I am also on a biologic as well which has made a difference. Has that been suggested to you-  or have you already tried and it has a bad effect?

 

5

thanks row, I was diagnossed about 20 years ago and also have fibromyalgia.  I  believe the bologics is what I can't do, also I can't take any antinflamatorys/asperian.  I've been on prednisone for 20 years, way to long,but its one of the few thingss that work.  I have a good brain/try to stay positve, but hard.  I also use solonpos/med pads and that sometimes helps.  Going to my Dr. this friday to see if there is something else I can take.  Gee its no fun but like I say they can't take my brain or heart.  Thanks agai n

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frances, thanks about the information I will take this info. to my dr. this week..  I truly believe there is something out there that won't have super bad side effects.

7

downey  thanks I have tried some food restrictions, some have helped and others not so I will have to mix some up agaain and try more things, thanks again

8

A study, done in the US I think, found that a very strict vegan diet resulted in elimination of joint pain in half of RA patients. Any reintroduction of animal protein resulted in a return of pain. Unfortunately it only works for half and is pretty strict so was found difficult to adhere to by some of the patients. That said, I have two strict vegan friends who eat very well. If it meant freedom from pain I think I might manage it - so it may be worth trying.

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thanks eileen  I myself don't know anything about vegan diets but i will look into this as my pain is getting worse.  My Dr.s office just called and I have to be seen tomorrow morning.  I take many supplements and they have helped me and I don't get sick, just riddeled with RA bad.  Again thanks for this information and I will try.

10

Hi Barbara, I can really sympathise with what your going through, when you feel nothing is helping and the pain is relentless. Simple as it sounds try a hot bath at night, it's good for easing joint pain everywhere and it relaxes you at the same time making you more susceptible to a better sleep. Has your doctor prescribed you morphine? I'm currently on two types of morphine for breakthrough pain while waiting for the biologic to kick in. I'm on a long acting morphine sulphate and liquid oramorph which I take up to six times a day. I also use the sticky heat pads which sick onto a thin layer of clothing over the affected joint. These are a few of the things I did to get me through the last 11 weeks of my horrendous flare. Hope at least one will work for you. Take care. G.

11

barbara - like you my rheumo rang out of options, we went through the chemist shop as well.

She told me with my history of cancer, it wasn't a good idea to try Methrotrextrate, but thats what it came down too.

She started me off on 5mg, now on 35mg, with blood tests every week, later every month, for liver function, and at first got a good response, but then started no longer working, she could't understand why, then decided to blood test me the following day to see how much of MTX was in my blood stream, no where near the dosage, thats when she changed me over to self injecting, had some problems at first as a little needle phobic, but a good GP who was willing to be patient with me every Friday afternoon, and I'm good now.

Also has put me on Leflunomide or Arava, 10mg, tried 20mg, but Blood Pressure became dangerously high, so back on 10mg, very strong mix, but my liver is coping or so say the blood tests, we are both happy, arthiritis although still there, it is manageable as is the pain.

Also take 6 x 1000mg of Odourless Fish oil, 2 for breakfast, 2 for lunch, and 2 for dinner, bonus is micro lines around eyes have gone, hair greasy if anything, but beautiful and healthy, if i wash it every day, I do the boy thing, and wash short hair under shower. Skin no longer dry.

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lyn  thanks for you info.  I also take fish (non that has shell fish, I'm allergic to shell fish)  Not sure about the other meds, they've tried me on so much in the last twenty years, but I will check with my new RA Dr.

13

gemma yes to hot showers and baths gotta love them.  I am allergic to morphene ( I don't think I am, to much about 20 years and bad reaction)  I also can't take biologics due to liver and infections.  I like you use sticky pads and they do help sometimes.  I would just like to have some more energy.  And I would like to try some morphine or stronger pain med to see if it would work.  I know it is just a bad flareup and I have to work thru it.  Thanks again

14

went to my dr. this morning, my ra has flaired up super bad.  They have upped my prednisone again and trying me on a new med to help me sleep and calm my depression so I've got good feelings about this, better sleep and better feelings got to get better