Dmards Advice

[CecilyParsley]

Hi everyone I hope that you are all as well as you can be.

Currently I am despairing so hope that you can give me some advice and / or guidance please.

After a truly disappointing appointment with my Rheumatologist where I advised after three months on Azzpriothine I can no longer tolerate the nausea, gut pain, itching and bile, my Rheumatology told me that there are no other options as Azathioprine is the only Dmard that works well on joint issues and ulceration.

I am currently barely mobile. Steroids work extremely well and within two weeks I can walk and get on with life. He gave me three weeks on 15mg reducing by 5mg weekly and will see me next year. I cane out and cried. For the past year I have been going out of my mind with leg pain. I have tried GP`s, physiotherapy and even a Chiropractor. All of them believe it is autoimmune in origin as my knees have not worsened but my leg off steroids will not bend and is excruciatingly painful to the point that I am not able to walk more than a few steps. I have given up going out shopping, socialising, gardening and cooking is increasingly difficult because standing has become so painful. My Rheumatologist wanted me to continue the Azathioprine. It feels like a punishment that there is no alternative for me.

I just do not know what to do next. Any advice or insight will be gratefully received.

[Dogsaremybestfriend]

Hi there! You mentioned joint pain and ulcers that are giving you problems. If that's the only manifestation of your Lupus and the rheumatologist wants to give you Imuran for that, you need to find a different rheumatologist. Also, after that fast taper of prednisone, you're going to be right where you started from. There are many treatments out there, but it depends on which organ system is involved. My second bit of advice is to change your diet. You don't need to follow any special diet plan, but you need to cut out caffeine and start avoiding processed foods. Eat a balanced diet with a high priority on fresh fish. Start cooking your own meals. Find an exercise routine that is low intensity like yoga or tai chi. You can't rely on medicine in your case, but there are ways to improve and feel better. Hope things go well for you. Peace!

[CecilyParsley in reply to Dogsaremybestfriend]

Hi thanks for responding. I appreciate you trying to help.

No joint pain and ulcers are not my only issues, they were the ones the Rheumatologist cited. I have Lupus and Bechets, APS, Raynauds, osteoarthritis, gut motility issues, Underactive thyroid, high blood pressure, severe vitamin D deficiency, pernicious anaemia, a bladder that will not empty fully but during Bechets flares evacuates involuntarily, swollen joints, rashes, Hemiplegic migraine, severe fatigue, asthma, pelvic floor pain..I am sure I have forgotten something as brain fog is difficult currently due to poor sleep.

As for diet I never eat processed food, I make my own from scratch. I am a vegetarian so eat clean , do not drink cows milk and make my own sourdough bread with pumpkin and sesame seeds. I drink 2-3 litres of water a day so I am sorry but I do not think there is much I can do to improve on that. Currently I cannot do much in the way of exercise as my knee will not bend. My Doctor and physiotherapist feeI have lost approximately 70% of movement in the one leg and it is agony.

[Bowenlady in reply to CecilyParsley]

oh Cecily Parsley my heart goes out to you love! You are so poorly. These rheumatologists are not living our lives so do not know what it’s like. No two of us on this site are the same. It’s their job to find a customised plan for better health for all of us. We are all afraid to say too much in case they say we no longer have XY or Z which would remove certain benefits for some people! I remember some poor woman getting a diagnosis of hysteria!! Have they done an X Ray of your knee? If your condition worsens can you phone your specialist nurse or even the rheumatologist’s secretary and explain that your pain has worsened and you feel only the steroids help with pain? I don’t want you to think I’m being cheeky asking this as you have probably thought of this already but I’m just trying to think out loud about your dreadful situation. Big hugs and love are sent your way. You have been so helpful and informative to me on the Lupus site, I just wish I could help you. Xx

[CecilyParsley]

Hi thank you for responding to me. Firstly I was that poor woman that one Rheumatologist told had Fibro and “hysteria” after he had prescribed 600mg of Hydroxychloroquine for Lupus . You gave me a giggle then…I needed it today 🤣

Yes the x Ray shows that my knee arthritis is severe but no worse than 18 months ago so my GP and physio said it is not responsible for the leg pain especially as the pain and stiffness responds to steroids whereas my knee pain in both knees remains unchanged.

The Azapriothine has made me vomit green bile all over Christmas and New Year, I started itching and had cream colour poop, gut pain and my liver enzymes were high. I really tried for 3 months to take it. I took anti emetics three times a day, it made no difference. The only thing it helped was my leg pain but when the lab flagged up my high ALT levels and asked for a repeat test and the stomach pain increased I rang the Helpline. The Nurse reviewed my bloods and told me that I was on too high a dose so to reduce by 1/3 and if I was still throwing up bike to reduce it again. I have been having weekly blood tests and even on one tablet my liver enzymes continued to rise.

I have never bothered the Rheumatology secretary in 16 years of being under the service until last year. I rang her five tines, each tine she told me she could not help but to call the Helpline. The Helpline Nurses. Sone were so helpful and kind and liaised with the Rheumatologist so I got 6 weeks of steroids. Others told me that no wonder I had leg pain given the size of me, said people my size shouldn’t eat carbs and asked had I heard of salad . The Azzpriothine was not discussed with me it arrived by post with a note saying get bloods taken before starting. It has been so badly handled. I feel very let down. The Rheumatologist knows how much pain I am in and how desperate I feel but if I don’t accept the Azapriothine I am on my own.

I am not even getting help from the GP practice. It has been all over the news, sold to a private company who are not paying staff or bills, so one GP hour per 220 patients.It takes 2 weeks to get an appointment and then trying to explain myself if ten minutes is difficult. She is fabulous but so overworked .

Thank you for your kindness, it does mean the world when you are floundering trying to come up with a plan. Today I just feel frustrated and defeated but hopefully someone here will advise of a Dmard that tackles the joint pain and the ulceration that works for them. That way I can write to him and ask if he will consider prescribing it for me.

Big Cwtches back to you xx