RA sufferer, diagnosed 08/21, suffering since 08/20 (possibly longer)

RobSharp1909

In August 2020 I started to develop knee pain in my right knee. Initially I put this down to breaking my leg 15 years previously, and continued to go about in relatively normal fashion. As time went on, the pain started to develop in my left knee, in which I put this down to compensating for the right leg. At this point walking was becoming difficult, getting up and out of a low bed painful, but again kept going, hoping it will resolve itself.

By January 21, the pain had then started to move into my wrist/hands, but again continued to leave things, and tried to go about life normally.

April 21 came by, and still no resolution, pain was getting worse in the knees with them becoming progressively sore (especially in the mornings). So I decided to speak to my GP. Initially with my GP I was more concerned about my knee, explained about the knee pain, that I'd broken my leg previously so I was sent for X-Rays and a MRI scan. Both scans showed swelling in my joints and mild osteoarthritis and the MRI specifically pointing out a ruptured ACL, full chondral loss in the right knee, as well as grade 3 tear to the popliteus muscle.

By June 21, things were again continuing to get more difficult and I started to become more open with my GP about the pain not only in my knees, but also my wrists/hands. I was referred for blood tests which came back with a negative result for Rheumatoid Factor, but high CRP levels. I was put onto Naproxen to try and lower the inflammation, which was very hit and miss. Added to this was Zapain for pain relief, again very hit and miss.

After 2 more blood tests which were still showing a negative Rheumatoid Factor and high CRP levels, I was referred to Rheumatology was an assessment.

By August 21, I was diagnosed with Rheumatoid Arthritis. I was given a steroid injection, which worked like a dream for 2 weeks, and then the pain started to come back. Since diagnosis I have been on Sulfasalazine (I have chosen this instead of Methotrexate for family planning), gradually increasing from 1 tablet, twice a day to 3 tablets, twice a day. Alongside the Naproxen and Zapain, as well as a couple of courses of steroid tablets. As a result of the pain, I h

Now we are into 2022, there seems to no positive changes to the pain. Stairs are becoming a massive issue, as is getting in and out of the bath, and even some days getting socks on. Opening jars and bottles, and lifting kettles and child is becoming increasingly problematic. I am about to start a course of Hydroxychloroquine, and will monitor the effects this has (hopefully positive). I am hoping to perhaps move onto Methotrexate if the family planning works.

After all of the above, what experiences has everyone had? Tips? Ways in which you have coped? I understand that it can take years to become manageable, but could really do with some help in the meantime.

ToneBlues

Hi @RobSharp1909

Welcome and thank you very much for seeking our support.

I understand that you were diagnosed with rheumatoid arthritis in August last year, and following an initial steroid injection which helped you short-term you started taking sulfasalazine, with naproxen and zapain (codeine and paracetamol). Unfortunately you still experience significant pain, and your mobility and ability to do everyday tasks are suffering. You are about to start taking hydroxychloroquine having opted not to take methotrexate (because of the risk of pregnancy?)

Unfortunately as you are finding it can take a good while to find a an effective cocktail of drugs to deal with RA - in part because it can take a number of months for DMARDS (like SFX, HCQ and MTX) to control symptoms.

Here is the Versus Arthritis main page on RA -

https://www.versusarthritis.org/about-arthritis/conditions/rheumatoid-arthritis/

It maybe worth checking if you can have another depo-steroid injection to help you whilst the DMARDs are taking effect - I have had a number of these in the past when my RA has been particularly active, and in my case got up to 6 weeks relief.

I also found that gentle exercise (an electric bike and swimming) helped keep my joints mobile and reduced pain -

https://www.versusarthritis.org/about-arthritis/exercising-with-arthritis/

Many people get very significant fatigue (not just ordinary tiredness) with RA - knowing your limits and learning to pace yourself is very important in the mid- to long-term - ways of dealing with fatigue have been particularly useful to me over the 15 years I have had RA - https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-fatigue/

Thank you once again for contacting us on the online community - I hope you find the above of some use. There is a huge range of experience amongst our membership - please stay in contact.

Very best wishes

@ToneBlues

Arthuritis

@RobSharp1909 So sorry to hear about your issues. In some ways sounds similar to mine.

RA crept up on me with painful feet, with me thinking it was my faulty shoes and i kept buying new shoes to figure out the cause. When my knee started playing up I thought it was due to compensating for my foot.

I’d had covid earlier in the year, and then flu vax2020 covid 1, covid 2 & fluvax2021, and only now learning that a viral infection, a cartilage injury and the immune stimulant in vaccines in that order can trigger a flare of an undiagnosed or sub clinical RA condition. Its not widely communicated, but was in an NRAS video posted here where the Rheumatology prof answered a question on whether meds should be halted to take a vaccine, and he said no, because they had bigger problems dealing with flares triggered by vaccines.

Later my nhs rheumy & private consult confirmed that flares are a known consequence of vaccines for RA patients, and its quite possible for something on the brink become fully fledged on getting the adjuvant (immune stimulant in vaccines). It would be interesting to hear your history, if any of this sounds familiar. The shoe buying behaviour has been repeated by a few on early onset.

With regards to MTX & FP, I’d suggest you book an appt with a fertility clinic asap, as RA meds like MTX pose the same risks to fertility as it does for cancer, and they have experience, work arounds and suggestions that work. The important thing is to try and preserve as much of your mobility as you can.