RA...When Will I Be Me Again?

[Nala_Dubh]

Apologies in advance for the lengthy post...my first time speaking to anyone about the process!

My pains started in Oct ‘19 in my feet...it took 3 months to see a GP who initially said plantar fasciitis, by this time I started to feel my thumbs were acting strange, pain on and off/red and swollen for a day or two. I called to get another appointment...4 weeks wait and in this time the pain was everywhere; both feet, both knees, every finger joint was swollen a few deformed looking, both wrists and both shoulders...

Blood tests ordered for suspected RA and a referral sent out...I could only get a Rheumatologist apt for end of July!! I went private just to see was I waiting for the right thing..by looking he said he would bet his career on seropositive/aggressive RA. I phoned GP with this information and said I couldn’t wait 5 months as the pain was already stopping my day-to-day life and was progressing quickly. On this call I was also told the blood tests I had done previous were damaged in transit and so no tests could completed.

The pandemic was just getting serious at this point so no in-person appointments. Eventually found a consultant who would do a phone consultation. At this point I had tried naproxen, ponstan, paracetamol, co-codamol and codeine - nothing touched the pain! And the pain and stiffness had now spread to my jaw. She started me on Hydroxychloroquine and Tramadol and asked my GP to arrange bloods (again) and chest X-ray to get official diagnosis and so I could start Methotrexate...they did but for 4 weeks time (this coming Monday!)

I have been bed bound the majority of the last 2 months, on the days I can get up I have to crawl up/down stairs, my partner has to dress me, brush my hair and shower me. I’ve lost 2 stone in the last 5 weeks due to not being able to eat. I’m a type 1 diabetic too and my fingers/wrists are so bad some days it interferes with administering my insulin myself! It also stops me getting steroid meds as it messes with my blood levels too much.

The pains were so bad I had to go to A&E and am now on morphine as well as Etoricoxib. My rheumatologist will start me on methotrexate next week pending the test results 🙏🏻

I’m wondering how long before I get my life back?? I know all RA meds say 3-12 weeks to feel effects but want to know from those living with it how long did it take....as I really don’t want this as my life at 32!!

[Bakinglover]

Hi, I'm so sorry to hear about your experience. It sounds like you've had a really rough time with your health and on top of that have had to really push to get the right diagnosis and treatment. You've been really unfortunate with that but hopefully now you finally have a consultant and a diagnosis things will swiftly start to improve.

I was about your age when I was diagnosed and I remember wondering if I would ever get my life back. I can't remember exactly how long it took for methotrexate to kick in, maybe a month, but then things really started to improve. I've had to make some changes in my life as a result of having RA and for each person that will be different. I found it helpful to see an occupational therapist and physiotherapist who had a positive approach and helped me to find ways to live as normal a life as possible. You're also doing the right thing by reaching out to people on here. I would recommend contacting NRAS who send out information and can put you in touch with someone with your condition.

I hope that's in some way helpful. Take care.

[Nala_Dubh in reply to Bakinglover]

Thanks so much for your reply and advice - I think I will push for physio and occupational therapist as I really could do with a positive experience/treatment!

[Hidden]

Hi Nyla

So sorry to hear you're having such a rough time. I have been there but without the complication of type 1 diabetes. Hopefully you are very near to getting sorted. I would agree disease modifying drugs do take 3-12 weeks unfortunately. I started a new drug recently but had to have an intermuscular jab of steroids in my bum to tide me over until it kicks in. Is that a complete no no for you with your diabetes?

At the moment nothing is stopping your disease, once you get on treatment things will get better. Hold on a bit longer and come and talk to us anytime. And don't be afraid to ask people for help, they want to do it

Take care

Kiki 😘

[Nala_Dubh in reply to Hidden]

Thanks so much for your message Kiki!

I took steroids last year for pneumonia and unfortunately it took months to get blood levels corrected which leads to its own problems I’d like to avoid as long as possible.

I guess it’s all just unlucky with C19 timing as everything seems to be so reduced/harder to access. Bar the private Rheumatologist...no one has physically examined me which baffles me.

Just hoping I can get started on actual drugs next week and start the 3-12week clock...however long it takes after that 🙏🏻

[Hidden in reply to Nala_Dubh]

My fingers and toes are crossed for you 🤞🤞🙏🙏 let us know how you get on. Big hugs x x

[Hidden]

Bloody Nora what a time to need help. I think a lot of us on here are frustrated waiting for diagnosis and appointments but before C19 waiting lists are atrocious due to lack of resources now with the added complication of C19 it’s worse. RD medication is a very long process with lots of trial and error. Some people the drugs will work quickly and they gave a really good quality of life others it can be along time but eventually get there. Patience is the one thing I’ve had to learn with RD pushing and stressing yourself only makes it worse. Rest don’t over do it. Use pain relief regularly don’t wait for it to be bad before you take something eg take paracetamol every 4/6 hours use ice/ heat packs , hot water bottles ( I like Epsom salts baths).

Keeping a diary take photos of swelling and redness all these will help you and your rheumatologist . It may help to find what makes things worse.

I wish I could help more but there is no way of knowing how or when things will improve.

Sometimes just talking to others who have RD can help so please keep in touch

[Rashford20]

Been in a similar situation to you recently. Went private to speed up the process and can a test to the injections, they were a complete game changer for me. I’ve been taking methotrexate for a few weeks and haven’t noticed any benefits yet.

[Hidden]

I was 36 when first diagnosed, and like you I had to crawl up and downstairs. Couldn't feed myself. I had 5 children. I began to get my life back during the first year But I've never got back to completely normal in 32 years. It is what it is I'm afraid, and we're all different. wishing you well. XX

[FunBalloon]

Hello and I'm very sorry to hear that you are suffering so much. But I agree with the previous posters that you are almost there now. You have a diagnosis and a plan of action. I was 20 when I was diagnosed (5 years ago) and felt like you did. I couldn't believe that the pain would ever go away. However I can reassure you that one way or another you'll find the correct medication. I've been on methotrexate injections since the beginning and it has been a life changing medication. Lots of people have felt good results with it. So hopefully you get to start soon. It took about 6 weeks for me to feel some improvement. I'm now taking it with hydroxychloroquine and that seems to work well for me. What you can do at the moment is use ice packs for the painful and swollen joints (15 minutes a few times a day). Gentle stretches can ease the pain and stiffness on to of that. I hope you feel better soon x

[Soundofmusic52]

Same here I had to have steroid injection at the hospital I could hardly walk the pain wAs horrible then course of tablets I was put on methotrexate it took 3 months to work now 2 yrs later I am on benepali as well I would say I have 80% of my life back still have flare ups tiredness is tremendous but I and like most of us on here have to accept it that was the hardest thing for me we adapt to like rest when we’re tired work when we have good days good luck think positive stay safe x

[Neonkittie17]

I’m really sorry to hear you’ve had a rough time and it’s still ongoing and it sounds oh so familiar. Time will improve you I assure you and it is a slow process for many getting back on track and even just to accept you have changed. So many of the rheumatoid meds take a while to work and patience is something we don’t have when we are hurting so much and have become so immobile. I was hobbling and swinging myself between two sticks just to get from the bed to the bathroom and lost a load of weight as all my muscles went when I wasn’t moving. Once your Methotrexate works you’ll feel so much better. I was 35 when diagnosed with RA after a year of nothing coming up in the blood tests so they didn’t give me any RA meds for 9 months. Mtx was my second med 8 years later and I had such good results I was able to walk up Snowdon and back down in Wales so that tells you what kind of mobility Mtx allowed me to have.

It’s hard as you grieve for the person you were and it hit me badly as I was a competing athlete. Focus on the things you can do rather than can’t at the moment and be kind to yourself. It’s not your fault this has happened. I felt much improved after 6-8 weeks of being on Mtx and then each week after that was a marked difference in movement and feeling of wellbeing. That awful sluggish feeling went too. I did feel tired after taking the tablets but learned to live with it and it felt less so as time went on. Don’t expect them to work right away. It’s a very difficult time to be newly diagnosed.

I hope you can get the support from your rheumy team you need, I too was in bed around 20-22 hours a day at my worst. I lost 2 stones and went under 6 stone. RA robs your muscles at first and makes you have a general feeling of malaise as it’s a systemic condition, I hope you can find the strength to find patience and week by week you will feel a difference and be on tje rosd to much better health. I was never the old me again but a different me and a better me in parts as I focused on other things and went part time to College/Uni and did a BA and Masters as I had left my work. My OH made that possible and it gave me a focus even if it was hard. I’m telling you that because I certainly didn’t give up and followed a dream once Mtx got me stable. I am sorry your diabetes is preventing a steroid injection for relief but hope you will soon feel improvement. Good luck.

[Hidden]

I can pass on a hopeful story, but what I can't tell you is whether your progress will be the same as mine.

I started with symptoms when I had just turned 70 and was initially sent to Orthopaedics as it was just one swollen knee at that point. Also my blood tested negative for arthritis. Lots of waiting to get an MRI scan and then to get the results, in which time I got more symptoms - other knee, plus crazily swollen hands as well as feverishness and a fainting episode.

Orthopaedics passed me over to Rheumatology, but that took another six weeks. Most of the more recent symptoms had disappeared by the time I got there, just the knees remaining swollen. A large number of tests were done and I waited to hear the results.

After about two weeks, my symptoms suddenly went wild - upper arms hugely painful (made me cry every night in bed), couldn't get up from a chair, could only shuffle slowly hanging on to my husband, stairs almost impossible, husband washing and dressing me, wrists burning as if a red-hot iron was being held on them. My husband went out and bought a wheelchair. I waited to hear the results of the tests, but had not been given any number to ring in case of getting worse, so after another two weeks I wrote to the rheumatologist and told her how bad it was. I was offered a steroid injection in one knee, which I turned down as inadequate when so much of my body was involved. I was given an appointment with the consultant about ten days later. She said she had been waiting for just one test result and was amazed at how quickly my condition had worsened.

From then on, despite one brief but quite nasty setback, things improved, at first quickly and then more gradually. Around five months later, taking methotrexate, Hydroxychloroquine and Prednisolone all that time, I was able to go on a very active holiday, involving both sightseeing on foot and hiking. That was nine months ago and I've only had a minor setback since then. Ironically, at this time when we can't go anywhere, I'm very well indeed.

I can't say how you will progress, though your age is in your favour. There are many treatments for RA. Different ones work for different people. Methotrexate works very well for many but not all. It's the only thing I'm taking now and my dose has been to just under half what I started on. I felt just like you at in the early days, not wanting the rest of my life to be as it was then. It's very hard getting through the time before the MTX starts working. Prednisolone helped me a lot. It's a shame you are prevented from having it by the diabetes.

I do hope your condition improves very soon. It's overwhelmingly likely that it will. Let us know how you get on.