Feeling lost

[Gand]

Hi, new to this forum but not to RA. I’ve had RA for 10 years have been on methotrexate, Cimzia and sulfa. Methotrexate has worked for years and went on Sulfa when pregnant and then Cimzia when all went to hell after the baby was born. Cimzia worked but ended up giving me psoriasis so was put back on methotrexate. Was working for awhile but now flaring up more often, and also experiencing rib/back pain. I went to the hospital for the rib/back pain was diagnosed with Costochondritis and sent home with Celebrex. This worked but I feel like some of the symptoms are still there. My reumy recently upped my mtx from 15mg to 20mg and added Plaquenil. I reacted really badly to the change and was extremely tired, nauseous and had pain in my upper abdomen. I couldn’t handle it so I stopped the meds after 2 weeks. Still taking my original 15mg of mtx. I’ve been trying to get a hold of my reumy but he is on vacation. Now I still have upper abdominal pain ( to a slightly lesser degree but almost continuous) and upper middle back pain, and tender ribs. I’ve had a chest mri and X-ray that showed nothing. I’m not sure what to do now. Life is getting difficult feeling so unwell with 2 small kids at home.

[Hidden]

@Gand if you cannot get hold of rheumy as on holiday what about your local Doctor for a chat. I was told to reduce from 20mg to 15 as nausea so bad and this helped but then went on to injections 20mg this week and I feel like I have been kicked by a horse, at the moment. However staying positive that I need to get MTX in me and working before I can figure out what to do next with consultant if this does not work.

I am being checked as rib area been sore and a cough so being checked by GP every 2 weeks but nothing shows on x ray too.

Just keep a journal of when/times etc you feel worse and maybe a food diary to see if any triggers. I find dairy not liking me lately and eat smaller and often is helping too.

I don't have kids but imagine this is very tiring and not helping you either when RA so loves us to rest.

Hugs D

[stbernhard]

Hi Gand, it's horrible not to know what is going on in your body. I hope they find the source of the pain soon. In the meantime, as Deeb said, keep a journal of your symptoms, pain levels, how if affects your mood and ability to function daily. Sounds very elaborate when you have to look after two young children, but it will help you and the doctors to get a better picture. ll the best.

[GinnyE]

Hello. Not sure where you are based but if in the uk you could contact the helpline at the hospital and speak to the specialist nurse. It sounds as though you need some reassurance and support from the medics who must be monitoring your bloods. If not them, speak to your GP?

I'm sure having to take care of two children isn't helping you to get some rest. I've been put on 20mg injections of methotrexate , nothing else, (had RA a year)this last month or so, I get the odd upper tummy twinge but spend alot of time resting. Going for blood check today.

It can feel very lonely coping with RA but you've been at it alot longer than me and sound as though you've done really well. I find if I talk to someone if i feel worried it helps alot. Best wishes. xx

[kkminton]

This sounds how I feel when I get gastric ulcers. I had an endoscopy and the inside of my tummy looked like the surface of the moon. Medicine changes can affect all systems ,

Wishing you well Gand

[Jackiecnunez]

Hello Gand, So sorry that you aren't doing well on the med. changes. I've had Lupus for 22 yrs. Reared its ugly head a year after I had my first child. Here's a little of my history and what has worked for me. When I was diagnosed with SLE, the Rheumy put me on Prednisone, then added Methotrexate, which didn't work well for me at all. They were times that I felt so hopeless, I know how you feel. I suffered for years until I migrated to the U.S. where my new Rheumy put me on Plaquenil 200 mg. twice/daily and gradually weaned me off of the Prednisone. I also went to see a Homeopath who changed my diet, put me on supplements which my body was lacking and also detoxed. My health improved, I went down to 200 mg. Plaquenil once daily until I was in full remission. I flared about 8 yrs. later because of Gall bladder issues which I removed about 3 years ago. After the surgery, the Rheumy increased the Plaquenil to 200 mg. twice daily, but has since been reduced to one daily. I also take 81 mg. aspirin daily. Diet has a lot to do with inflammation in our bodies. We also have to find ways to de-stress --- I love gardening. If you feel that you need a second opinion, don't hesitate. I drink Almond milk - stay away from dairy. I use stevia and eat a lot of fruits and veggies. I stay away from grapefruit - very bad. Don't eat much citrus because of the acid. Very little caffeine, alcohol and no smoking. I hope that your health will start to improve. I hope I was able to shine a light at the end of the tunnel.

[Jackiecnunez in reply to Jackiecnunez]

I am also gluten free and try to exercise as often as I can - mostly walking and weight bearing.

[Gand]

Thank you all for your kind words and helpful tips. Unfortunately I moved recently and am on a wait list for a GP. I live in Canada and GP’s are hard to come by. Crossing my fingers I get one soon. But I will start a pain log that is good advice and start paying attention to what I eat and getting more exercise, all good ideas in terms of trying to get the best out of me. I’ve been feeling a bit better every day so I guess the meds are getting out of my system and I’m starting to feel “normal”. I know my reumy wants to try me on xeljanz next so I guess we will see how that goes. Happy weekend to you all.