Newby but old symptoms

[Denoblat1]

Was originally on Neproxen but when changing doctors was told it was better I came off and had tests for RA.

Was diagnosed January and put on Sulfasalazine but within weeks had bad chest infections.

I considered myself pretty healthy and cycled regularly. In October I was told it would be best I went on Methotrexate and started on 4 tablets on a Monday for 6 weeks plus folic 5mg.

I am now on 6 Methotrexate per week and boy do I feel like poop!

I still get flare ups and pains in joints and stiff hands. Not been able to ride a bike since September ( I'm used to 30 mile rides a week)

Cant even do 1hr on home trainer without pain reaction during sleep.

Any know how long before I can feel anywhere near normal?

[JenniferW]

It takes around 3 months for methotrexate to kick in and will carry on improving until about six months and then level off. You might need a higher dose, I was on 25 mg (10 pills) for several years and then reduced to 20mg (8pills) due to me being fed up with the side effects.

[Denoblat1 in reply to JenniferW]

Thank you. Have found it difficult to deal with as I felt under control on Neproxen. But hay! Let's see. I have an appointment in January to discuss.

[JenniferW in reply to Denoblat1]

Naproxen is very effective, but it isn't good for your stomach over a long period sadly.

[Denoblat1]

Thanks Ajay. I'm on 30/500 co-codamol but as active during day not taking. Make me drousy.

[Denoblat1]

Thanks for replies. Feel a nit more supported now. Will see how next appointment goes. Can see a big discussion coming up

[Sky42]

It took me about 6 months before I got back on my bike after diagnosis. I couldn't grip with my hands due to the swelling. I'm on methotrexate and sulfasalazine. Try and be kind to yourself. You might want to see if you can get an OT referral for your hands, it helped me knowing I was doing something positive and I assume helped my hands regain mobility 🙂

[Haz58]

They may give you a steroid jab to help until the new drugs kick in. You have to give them time but there are lots more out there if you can't stand the side affects. Hope you get answers in January.

[AgedCrone]

Why don’t you try taking it easy for a while? I think trying to keep up your regular cycling & other exercises etc - before you have given the Mtx a chance will probably only lead to disappointment.

Naproxen does nothing to protect your joints which in the long term is vital if you want to get back on your bike. Ask your rheumy nurse about something for the pain & something for the nausea then give the Mtx at least 6 months & work towards accepting DMards are the answer,,,,maybe not Mtx for you…but with all RA drugs….you won’t know until you try them….& during that time we probably all felt like you are feeling. …

Good luck….it might seem daunting…but you will get there,

[Madmusiclover]

I never did on methotrexate. Not even when changed to injectables. I just cried all the time and no improvement to symptoms.

[Haz58 in reply to Madmusiclover]

Me too. Ended stopping because it gave me gastritis.

[SteveSi]

I (M70) had taken aspirin or paracetamol based drugs all my life for JRA. I wore out my hips cycling and have two full replacement hips. Other 'stronger' drugs had side affects worse than the pain of RA. Then after retirement I found that eating bread made my joint inflammation and pain a lot worse (I bought a bread machine and had really bad flare ups). After experimenting for a few years I found that cutting out all bread and grain products from my diet caused me to be pain and swelling free. No throbbing joints, no pain - and I found that I needed no medication. 5%-10% of RA patients later develop celiac disease. I believe that my immune system is making autoantibodies in response to some forms of gluten (or maybe chemicals found in grain) and these antibodies attack my own joint tissue.

I recommend anyone with an autoimmune disease try the Auto Immune Protocol diet for a few months (Phase 1 just cuts out any foods which are known to cause sensitivities in some people) and see if your symptoms improve. In my case it seems to be 'gluten' (but not just wheat, barley, oats and rye as some 'gluten-free' products also affect my RA) but others may find they have different sensitivities (e.g. dairy, eggs, nuts, coffee, etc.). The AIP diet plan has now been scientifically proven to be extremely effective with many IBD patients and other trials are now ongoing for other AI diseases. Is it worth cutting out some foods from your diet for a few months to see if you can live a pain-free and flare-up free life?

[Denoblat1 in reply to SteveSi]

Hi Steve.My wife has a rare AIH and has consultant care at KC.

She has completely changed her diet and whe I was diagnosed she has been monitoring me like a Hawk.

I have been wondereding about certain food stuffs. I am at the suck it and see stage now.

Thank you for your reply it has given me thought for food sic!

[SteveSi in reply to Denoblat1]

I had seen 'cranky' diet videos for RA, etc. for many years on YT which talked about eating good foods, organic, Mediterranean diet, Paleo diet, etc. and had always been extremely skeptical. I now believe that they only appear to work because they are not eating the 'bad' foods that they are sensitive to. This makes more sense to me than saying 'eat x because it is good for you'. After all, RA is an autoimmune disease so the body is reacting to something we ingest or are exposed to, which is why we get flare ups - otherwise we would be really bad all the time (unless you think the human body randomly and spontaneously generates a flare up every so often without any external influences?).

So I advise you to look up the AIP diet plan (two stages) and see if your immune system has any triggers or sensitivities. Basically cut out all processed foods and only eat/cook 'pure' raw foods with no processing or added ingredients so you know what is in them. It is very hard to find processed foods which do not contain grains for instance! Even if your body shows no improvement, at least you will have eaten healthy food for a few months!

[Denoblat1 in reply to SteveSi]

My wife follows a strict non.processed diet and we eat only from fresh. My sideline is that I am a sugar freak. Flapjacks when riding and sweets when she is not looking. I am going to look into sugar spikes to see if they are related. My wife has been eating clean for 12 years due to her condition and her choice. Maybe it's time to take a leaf out if her book. SteveSi thanks for the info.🤗

[Denoblat1]

Thank you all. I have come to the conclusion that there is no cure all.We all seem to react differently I will fight on and hope it can be resolved.

Thank you all once again. If nothing it has given me some support.

👏👏👏👏👏

[GordonEdin]

As others say, it will likely take three to six months for methotrexate to take effect.I was on Naproxen before going on methotrexate and, while I thought that it did help a bit, it really didn't make that much difference whereas methotrexate got me back to normal and stopped joint damage. NSAIDs (like Naproxen) have a bad reputation for causing dangerous stomach bleeds with long term use

That said, I was initially kept on Naproxen along with the methotrexate and got one or two steroid injections when things were really bad. Maybe ask if you can take some Naproxen until the methotrexate kicks in?