Rheumatism horror and knee replacement

[MushMonster]

We do need a bit of help and hope with this one. We really feel lost and hopeless.
My DH has been waiting for a full knee replacement for three years now. Both knees, no cartiladge left on the right side.
He has been deteriorating all along the three years in the waiting list, gradually limping more and being able to walk shorter distances.
Last November just like that, his knee would not fully extend or bend. GP sent him to A&E. X-ray and bloods were taken, nothing they could do. Then back to GP to contact the consultant addressing the current state of the right knee.
But... in January he started a very quick and harsh onset of rheumatism. Pain and strange feeling on joints, feet, ankles, fingers and wrists were the first. By February his joints were massively inflamed, visibly looking like rheumatism, and losing mobility very quickly. Lots of blood tests, referal to rheumatism team. He saw them in May and was prescribed sulfasalazine in June, 2 g per day.
In between, he lost a massive amount of weight very quickly, unexplained. He had endoscopies, MRIs, liver ultrasounds, lots of bloods. His gastrointestinal system is very swollen, but biopsies and infection tests came back ok, thanks God!
He is really suffering. He cannot fully open and close his hands. Knees do not fuly extend. Shoulders are really sore. Even his jaw hurts! He can only walk like 20 paces, heavily supported with the crutches, and on a good day. But it kills his shoulders.

Has anyone got themselves out of something like this? Did the drugs work? Did you recover mobility?
And did anyone have a knee replacement and rheumatism at the same time?
We are really worried and stuck. We would really appreciate someone to talk to and share experiences.

Thanks for reading such a long one 💕💕💕💕💕💕

You may well find that once the inflammation is under control the knees will benefit as well. I am sure he will still need the surgery but inflammation and the stiffness that comes with it makes everything worse. I remember RA hitting me like a freight train and my husband saying that I would soon be needing a wheelchair! Once everything was more under control I managed several years before I needed my knees doing. Steroid injections kept me perfectly mobile.

It has helped a lot talking to others indeed. I hope he gets luckier with next drug and steroids.
He will 100% need the surgery anyway. He had been waiting for 3 years before RA showed up. And there were no other options for him at that time. Both knees, full knee replacement.
You know, he has a wheelchair. Because he can only walk a short distance and without it he will be just home. At least he can go out and about to distract him a bit from all this. Though we have to push him, because neither his hands or shoulders are strong enough to self propel.

I do really feel for him and you too. Once he has found the drugs that suit him it honestly will really improve. Most take two or three months to reach full strength so I am afraid it is a question of trying them out one by one. I use the website Healthunlocked which has an RA forum and is very useful in terms of support from others in the same boat.

I've had rheumatoid arthritis for ten years. I take sulphasalazine and two other drugs. Sulphasalazine on it's own is clearly not enough and he needs at least to start a second drug, probably methotrexate. They do tend to start low and add drugs as they monitor. Also all these drugs take up to 3 months to start working.
As for steroids, yes they would give instant relief and maybe that's what he needs. They are however, very difficult to stop. An alternative to tablets might be a kenalog injection or similar. It might tide him over until a stronger drug starts working.

He has started the process of asking for the next drug and steroids. Hopefully the injections, but let's see what his RA team advices him.
He has only been 3 months and a few weeks on the medication, so it makes sense with what others experience and what we read. We have been told it takes time and a few goes. Plus he does have inflammation in his joints, but also gastric system, nodules and his skin is really flaky (it could be psoriatic too, we just do not know yet).

The knee surgeon failed to take that into account in the appointment, but hopefully he will read all DH file before next meeting and it should be better.
After crying, thinking and talking to others, I think the knee surgeon was not expecting his patient to arrive in this condition because he had not read further than his own notes, he possibly did not have time to go through the diagnosis and tests in my DH file. And I am more hopeful that the next meeting will be more productive and re-assuring.

I know this is from a couple of weeks ago but wanted to offer some thoughts.
I had rapid onset RA in multiple joints. I had various medications, including steroid injections on first visit. After a few years on NsAids, I had a massive flare during covid (couldnt lift anything, walk, cycle, drive or even type,) and am now on biological, which were life changing. I am mostly symptom free.
Once the flare was under control with medications, I took great care with my diet, and have cut out most ultra processed foods. Also do strength training and walk every day. When the RA is bad you lose strength and can damage ligaments and tendons so really good to build up muscle to repair and protect.
Hope things improve for him.

Thanks @Jeevesnotwooster
He has a doctor appointment with the knee surgery team on Monday, so hopefully that will clarify what the plan regarding his knees is ( including use of steroids)
He is waiting for his RA team to step up the medication, because he is on a very soft one for his current situation.
We are feeling calmer now because we have come to understand we have to push for treatment and solutions, and keep going at it.

Things looking a bit more positive. The knee surgery is, finally, going ahead, but a bit delayed.
It seems like the surgeon has spoken properly with the rheumatologist, finally! And he saw things more positively. He kind of even acknowledged that the wait has been a rather long one. DH carries on with the same medication, but it is likely he gets stronger ones and steroids at his next app or earlier, as discussed on his last appointment.
He is slowly moving his hands a bit more, he can close them a bit more now. And legs are a bit stronger. He has just passed the three month mark with his first medication.
Let's hope it keeps advancing.
I honestly never thought I would find it so tough. I am developing a phobia of the medical profession, to be honest. On top of how hard the illness is, their ups and downs are soul destroying.