Some advice please...

[Annscottie]

I was diagnosed with COPD and bronchiectasis in 2010 with a lung function of 33%. I fought for and was eventually referred for pulmonary rehab in 2012. Since then have kept up exercise at gym until pandemic when I did exercises at home.

I started having joint pain and stiffness in July last year but only in one hand. Just thought it was old age (I'm 72) More recently I've been in a lot of pain with swollen joints in both hands, wrists and neck. I went to Doc and after a blood test had an urgent referral to a rheumatologist in local hospital. Doc thinks it is Rheumatoid Arthritis due to high CPR??? result.

I am also on levothyroxine as had thyroid removed in '88 due to cancer.

I have my first rheumatology consultation tomorrow. My question is what should I be asking rheumatologist?

I have looked at UK sites Versus and NRAS and found a lot of information but I know some of you have RA as well as lung problems and am sure your knowledge and advice would be really helpful.

Thank you for reading my post.

[O2Trees]

Hi Annscottie, sorry to hear you may have RA. CPR is I think a blood test that shows inflammation in the body, which would make sense. That you've carried on with your exercise is impressive and what struck me reading your post is that you dont mention pain or swelling in your lower body which I assume may mean that you can continue exercising?

Not having RA I know little about it. I understand from friends who do have it that eating as alkaline a diet as possible, low red meat consumption and little alcohol helps them. There are lots of sites to google with this kind of information. And you could ask to be referred to a dietician. Good luck for the appointment tomorrow

[Annscottie in reply to O2Trees]

Thank you O2Trees. I'm finding it hard to exercise at the moment as I am so tired but you're right no pain in lower body apart from right knee and swollen toes.

Interesting to hear about diet. I very rarely eat red meat and have 1 sherry a week - 2 if I'm really naughty! But I will look up alkaline diets.

Thank you again for your post.

[peege in reply to Annscottie]

hi Annscottie, you could also cut out acid food , it may help. Some are obvious like citrus fruit, not so obvious are tomatoes and strawberries (the only one I can think of at the mo). I do this to help osteo arthritis and acid reflux. Good lucluck tomorrow. P

[Annscottie in reply to peege]

Thank you peegee.

If I could cross my stiff, swollen fingers I would. Snow is falling and I hope roads ok tomorrow.

[PaulineHM in reply to O2Trees]

I do agree with you about high inflammation levels here, however is it CRP you are referring to here ? C- Reactive Protein, high levels in the blood measuring inflammation. Have a wonderful day.

[O2Trees in reply to PaulineHM]

Yes, that was my assumption re CPR.

[Hopeful1]

Hi Annscottie . I share your 3 conditions and have done for 10 years +. The only point which springs to mind is making sure your rhumi is aware of lung condition as it can affect choice of treatments. Good luck with whichever way chosen there are many effective treatments but all take a while to work. We are all different and different meds suit different folk. Then once on RA med some antibiotics are not advised but otherwise I don't find any crossover between the conditions.

Glad you are in touch withNRAS. They are excellent. Make full use of them.

All best wishes for your journey.

[Annscottie in reply to Hopeful1]

Thank you so much Hopeful1. I saw Dr at hospital today. He was very knowledgeable about what medications to use/not to use with bronch and COPD for which I was truly grateful.

Starting on Prednisolone and Hydroxychloroquine. Couldn't have injections as blood pressure through the roof! In a few weeks if all well will slowly ease off steroids and start Sulfasalazine.

Hoping will get some relief soon.

[Ergendl]

Wishing you all the best for your appointment today. Do let us know how you get on.

[Karenanne61]

I don't have ra, but like you an absent thyroid. Just wanted to wish you luck for your appointment. I find writing questions and concerns down is helpful.

[Alberta56]

Good luck with the appointment.

[Izb1]

I do hope your appointment went well today and you have got a good rheumy doctor, they can make all the difference in your treatment. I have r.a. and bronchiectasis and am on Methotrexate. I did try a Jak inhibitor but came off it due to the side effect being shingles. Alot of new evidence is showing that poor gut health is causing autoimmune diseases, I have read alot about this and tend to agree, although i do think it can be hereditary as well. When my Mum first started with this they put her on a dairy free diet along with a list of things she shouldn't eat and this made her very poorly so took her off this and kept to a sensible diet instead. I went through all my meds/vitamins and diet with the hospital pharmacist when first diagnosed and she was very good. I make sure i get enough daily exercise unless having a flare up, then its just too painful so dont do it. I also leave of my meds when taking antibiotics. I am sure the hospital will tell you all about this on your appointment, let us know how you got on x

[Maricopa in reply to Izb1]

Methotrexate was prescribed to me for my psoriatic arthritis. However, after 4 weeks I was gasping for breaths. I never gained that loss back. Many arthritis meds affect the lungs gravely. I’m now on Arava. Due to it’s known side effects for damaging the liver, my rheumatologist now wants me to change to Otezla. I can’t, as Otezla is way too expensive. Infusibles are out of the question as they affect the respiratory system in those with lung disease. I was eventually diagnosed with alpha one antitrypsin deficiency ZZ allele. Come to find out the majority of alphas get a form of arthritis.

[Izb1 in reply to Maricopa]

Its terrible that this affected you so badly and you now have damage that cant be repaired. I refused to go onto medication for quite a long time because of side effects but the pain got so bad i really didnt have a choice,although there are side effects from all meds , some we can live with. Its also shocking that you have to consider the price of what meds you can afford. We are so lucky in this country that by paying into a system all our working life we dont need to worry if we can afford it, although there are some meds that wont be issued to due to cost now. I really feel for you having such worries whilst trying to deal with ill health x

[Annscottie in reply to Maricopa]

Good grief Maricopa. You have been through a lot. Sending you my best wishes.

[Annscottie in reply to Izb1]

Hi Izb1. I was very impressed with the Dr I saw at the hospital. He was very knowledgeable and answered all my questions. He wouldn't prescribe Methotrexate because of my lung disease. Starting on Prednisolone and Hydroxychloroquine. Couldn't have injections as blood pressure through the roof! In a few weeks if all well will slowly ease off steroids and start Sulfasalazine. Thank you for your info about diet and advice about exercise.

[Izb1 in reply to Annscottie]

This is really good news as Hydroxychloroquine is well tolerated and the steroids will soon make you feel better and get to grips with the inflammation. I hope it all works for you and you start to feel more like your old self pretty soon x

[Annscottie in reply to Izb1]

Ooh thanks for the positivity. That's made me feel better already! so many dire warnings about side effects etc I've tended to focus on the negative!