Feeling sorry for myself! Having a flare up, am on me... - NRAS

NRAS

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Feeling sorry for myself! Having a flare up, am on methotrexate and sulphasalazine. Not Able to contact rheumy dept, GP written but no

DrWhoFan profile image
12 Replies

response. Have pain in shoulder, left knee swelling up again (only 6 weeks since it was drained and steroid injection), other knee iffy. Lots of pain in right hip, just cannot walk or go up stairs. Been to physio who said might have nodules on hip joint, hip flexor muscle rubbing on nodules causing pain and inflammation. Makes sense as been to osteopath for 6 weeks and no better. Anyone else had this. Sorry to moan but so fed up!!

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DrWhoFan
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12 Replies

Hello

Can understand why you are so fed up. When did your GP correspond with your Osteopath, and when is the next appointment due??. At hospital. contact your RA nurse, and Specialist, you should have an appointment made to make sure you are ok with your DMARD (s). Is the Osteopath somehow connected with hospital.??

Contact the RA nurse, there should be an emergency number, if you still cannot get satisfaction see your GP URGENT. so they can get some treatments arranged for you as you are in serious pain

Good Luck

BOB

DrWhoFan profile image
DrWhoFan in reply to

Hi Bob, thanks for the reply. GP not in contact with osteopath, and I have no more appointments as now seeing physio didn't want to confuse things. Osteo just private, so not connected to hospital. Have only just found out about rheumy nurse, she is there 2 mornings a week for 1 3/4 hours. Our help line was cancelled 6 months ago and we are only allowed to contact them via GP. He wrote last Thursday I believe even thou I went before Christmas. GP will not medicate us without conferring with rheumy dept. we never get to see specialist as our clinic is staffed by GP's with interest in rheumatology, who then report what we say to her. Frustrating! If we jump up and down, not literally in my case, you can speak to them, but they make sure you know they are very busy! Anne

in reply toDrWhoFan

Hello

Sad you are very busy not being well, all I can suggest is the GP,

Personally you need someone to discuss the DMARD (s) you are taking, you should be having blood tests. Under those conditions start with GP. If needed you can ask your GP for a second opinion, I live up country here on Scottish Border and we have Clinics with the same nurses I had when 45 miles south and see my RA clinic every two weeks for bloods, and 4/6 weeks for medication assesment, Also I see the Rhumi every 4/3 months. The condition you find yourself in is it seems is not working, as they will need to be on top of your condition

All the best, keep a hold

BOB

DrWhoFan profile image
DrWhoFan in reply to

Thanks Bob. I have blood tests every 2 weeks. My inflammation levels are rising, and my GP seems quite worried. The rheumy said they keep a close watch on our blood results, but obviously they don't. I will ring nurse on Tuesday to see what she says. A bit frustrating! GP says if I have not heard by Next week to get secretary to write again. Wait and see, I suppose. Thanks for your support. Anne

hev53 profile image
hev53

Really sorry to hear about your flare up. Can you ring you Rheumatologists secretary on MOnday and let him/her know?

I haven't had this but in the middle of a flare myself with hands and feet but nowhere near as bad as yours appears to be. Sending you a gently hug.

denvajade profile image
denvajade

Hi there I had the terrible pain in my hip, barely able to walk and had to crawl up stairs, I had a cortisone injection and it was wonderful. All the best

DrWhoFan profile image
DrWhoFan in reply todenvajade

Thanks, didn't know you could have hip injected, did wonders for both knees so might ask for one.

vickywaterloo profile image
vickywaterloo

I was on sulphasalazine when first diagnosed. Had to have knees drained on a regular basis and steroid injections. Eventually they put me on Humira and I never looked back. If the first line of meds dont work they are able to try biologics. Push to be given them. They are expensive and will put off prescribing them. I have just stopped humira after 11 years as awaiting kidney transplant but my anti rejection meds are also biologics ans will hopefully sort RA out too. Be strong, this is your body and health and you deserve the best treatment you can get. Good luck.

DrWhoFan profile image
DrWhoFan in reply tovickywaterloo

When eventually get to see rheumy will ask about this, thanks

hatshepsut profile image
hatshepsut

Have you had your knee xrayed? I have chronic pain in knee, drained plus injection several times. Xray showed no room in joint. Going for orthopaedic appt ...? replacement joint !

Could be causing pain in hip.....compensating for knee!

DrWhoFan profile image
DrWhoFan in reply tohatshepsut

Hi, yes had knee X-ray year ago, lots of miniscus damage, could have had new knee but rheumy said they could control it with drugs! Hmm. Have just had hip X-ray and some RA damage, but got to have MRI scan to back up request for orthopaedic appt as GP said they are not allowed to make referrals at the moment. Fine! Physio thinks hip causing knee probs. might ask for both knees to be X-Ray Ed again!

DrWhoFan profile image
DrWhoFan

Hi All, Just spoken to Rheumy nurse who them spoke to specialist. I am to take 10mg predisalone for 4 weeks, then 5mg for 4 weeks, then stop. By then I might have my proper appointment x

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