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 💕💕💕💕💕💕

I can only comment on knee replacements. No other health issues. I’ve had both my knees replaced.
If he has his knees done he absolutely must do the exercises every single day, 3 or 4 times a day as prescribed.
They are extremely painful, take your breath away painful but if he doesn’t do them he will not gain any benefit. It’s a waste of NHS money not to do the exercises & hopefully he will walk pain free afterwards.

We are hoping he has his surgery done soon. They have called him in for the pre-op. And we are waiting on a further check of the options.
I have zero doubts he will put in all his might into exercising and recovering. And he is relatively young, 61. The onset of rheumatism has really affected him. We are really hoping he can go into remission on time for the knees to be done.
Thanks for replying.

I would call the rheumatology team and tell them the medication isn’t controlling his symptoms and pain, it can be very much trial and error with the drug choice / dosage, given he’s been on them since June and it’s not working well enough they should either do a telephone appt or bring your husband in for assessment. Anything new or lasting for any length of time is encouraged to be reported for advice or medication change. Hope you get some help soon.

I will tell him to give them a call. Fingers crossed.
Did you ever have the steroid injections? Or steroids? He is a bit worried about those, but I think he will need them.
It really came in quickly.

He needs better medication. I have rheumatoid arthritis and sulfasalazine wouldn’t even touch the sides. I’m surprised that’s his only prescription for what sounds like quite a serious flare. I hope they get him sorted

Steroids work really well. When taken correctly they shouldn’t cause any issues. When I was first diagnosed I had a three month course of steroids whilst the methotrexate was building up. Definitely ask. Does he have a clinical nurse specialist he could contact?

I am advicing him to go for the steroids.
It is difficult to contact the nurse as they have long lists here, but he can leave a message indeed. She usually gets back to him in two days.
I think he needs a stronger drug too. I think his second in the list is the same one you had, actually. He is feeling better with this one, but he is not regaining any mobility, sadly.
It does give me hope to hear of someone that has walked this path. It helps so much! Thanks.
It took less than two months to set in his whole body.

That sounds awful for your DH OP.
I have rheumatoid arthritis, but nowhere near as bad as you've described. He must get back onto the consultant for a review as the sulfasalazine isn't working. There are many medications out there and it's trial and error to find what works for you. I'd also push for steroid injections. This will help relieve his pain in the short term. He absolutely must advocate for himself to his consultant. If he gets no joy there (the waiting lists can be long) tell him to go via his GP who may be able to make an urgent referral. Don't be fobbed off, he shouldn't have to live with this level of pain and discomfort while he awaits surgery.
Can you afford a private consultation? That might be an option to deal with pain management.

No way we can afford a private consultation.
We have spent all our savings just to get over this 9 months of hell.
But, yes, we will keep chasing the rheumatology team.
Due to see his surgeon in October. He needs a certain level of fitness for the surgery. They are not sure they can operate right now. It is driving me crazy with worry.

He must do all the pre-op muscle strengthening exercises hes advised to do.

Seems daft to do those exercises for the legs beforehand but the muscles need to be toned to help with strength post op. I know from experience it’s painful to walk at all pre-op but it really pays off.

If you think about it, all the tissue, ligaments & muscles supporting the knee are going to be disturbed during the operation. Post-op the actual joint will be strong but the surrounding tissues will cause unimaginable pain.

Exercise, exercise and ice packs are the saviours of choice! He must obey what the physios are telling him and thence if medication is sorted out for his rheumatoid arthritis, he’ll be so much better.

Im regularly at the gym and swimming these days. Pain free after ten years of pain. One knee after the other.

Here’s an ice pack link, but research for alternatives. He will need them ++.
A bag of peas will not do!
www.google.com/aclk?sa=L&ai=DChsSEwj64fz8zYKQAxXzlFAGHW_CDb8YACICCAEQIBoCZGc&co=1&gclid=Cj0KCQjwovPGBhDxARIsAFhgkwQjNQut72KdEdsDXE35PZSwFWyAwTe7QHy_SPw3JmJ6ar3-ghGV5XgaAtBgEALw_wcB&sph=&cce=1&sig=AOD64_1WPS3qU8xM-OHVU7d9jwZxI0oylw&ctype=70&q=&ved=2ahUKEwjq-_b8zYKQAxU6dUEAHfXLPAwQwg8oAHoECAcQXg&adurl=

It took me several years to get my RA under control and unfortunately it does depend how good your team/consultant are. You will have to steel yourself to becoming very persistent I am afraid. I was on three different drugs including MTX for many years and this did work although the MTX caused other significant issues so I have now had that replaced with a biological which is absolutely brilliant. Keep going back to his team, steroids are like little magic pills but they are very difficult to get off - took me two years under a proper programme of reduction. The injections into affected areas are much better I found. MTX is quite cheap so you will find that many rheumatologists will give it ages to work fiddling about with dosages etc. It is good but if it doesn't work you will have to ask to go on to the more expensive biologicals which can be a game changer. Mine also came on very quickly and everywhere at once but to look at me know you wouldn't know I had RA so you will get there, but you must be your own strongest advocate - if something doesn't work say so and be persistent.

I forgot to say I have had a knee replacement but my RA was well controlled at the time. I am not sure how they will view doing an op if you are not yet in that position. I had to stop my meds for a fortnight before the op to reduce the chance of infection as they cause you to be immunocompromised. I would talk to your RA team about that. I also get various vaccinations because of that - Covid, flu, pneumonia and shingles so you might want to also want to talk to your team about that.

The main problem is that he does not have instructions on which exercises to do yet. He has no physiotherapist yet. Both the rheumatologist and knee surgeon have refered him to physio, but still waiting.
Last time he saw a physio was Feb and they needed to wait to his diagnosis before working with him.
He will do those exercises religiously, I know. Once we get there.
We are trying to help him put some weight on his legs, with the crutches and walk as many paces as he can.
We have decided he is going to press his doctor for a more efficient drug if possible and some steroid or other pain relief treatment. So he can focus on strengthening the knees for the surgery indeed.
It feels like an eternity! That is what is dragging us down.
Thanks for the ice pack link. I will suggest it to him. Interestingly, he feels better with heat at present.
It helps to hear that you had both knees done, even with RA.
His appointment with the knee surgeon was rather grim. It did not sound hopeful at all. Hoping that the second appointment, for a second opinion, is more positive and they do offer solutions and a proper plan.

@CandidOP that is what I am gathering indeed. That he needs to be pushy, persistant and take the reins. Keep calling them. Keep asking questions. He is not the type to do so. I have nagged and I do hate to nag. He says he is calling the team tomorrow.
This drug he is in does something. The swelling is visibly going down. But it is not improving his mobility yet. I am positive it is time to change.

The knee surgeon is not positive at all about the surgery. He asked some weird questions and seem to think the knee should be in better condition than it is movement wise. He seems to be dismissing completely that his patient also has RA since Jan and just started the meds for it. At least he has asked for a second opinion and physio. But his attitude on the day crushed my hope that day.

Call versus arthritis
And follow their knee exercise videos

Exercises for the knees | Versus Arthritis https://share.google/6iytxLxmgACdlnCzH

See their videos too

Thanks for the videos @cestlavielife

He is doing most of the movements in the videos indeed. But, for example, the step up and down, he cannot do without crutches. He goes up and down 14 steps 4 times a day. But with the crutches.
Let's see if I can get him to call Versus arthritis.

Sulfasalazine is one of the not very strong drugs, it's nowhere near enough treatment for him.

He needs to get blasted with steroids and put on a stronger drug, which will hopefully have kicked in by the time the steroids wear off. This is a very well trodden path that thousands are on, myself included.

Call the rheumatology directly through the secretary or nurse practitioner, tell them how much worse he's getting and he'll be seen quickly.

My mum has severe RA she is on methotrexate and humia, plus other drugs that I can't remember off hand. When things are really bad she has to take steroids too. She has been on a low dose of 2.5mg of steroids for around 25 years.

It does sound as though your husband needs to be on stronger meds to get the RA under control.

Have you thought about Acupuncture? I have been having regular treatments for pain and gut problems. I had a knee replacement 3 months ago after years of waiting and deteriorating mobility despite walking as much as possible. My consultant was very surprised at my quick recovery, my Acupuncturist came to my home twice to treat me after surgery. Everyone is different and some people don't like Acupuncture ( it can hurt depending where the needles are) I pay £50 for a 1 hour treatment. The plus apart from rapid recovery is no side effects or horrible medicine, trips to the pharmacy etc etc. I'm about to return to swimming as soon as I get over my cold. If you're considering Acupuncture make sure the person is Licensed and qualified, there's a register. Hoping you and your husband get over this horrible experience. Best wishes.

I perhaps should also mention that my Rheumatology team and knee surgeon work at the same hospital which is an orthopaedic hospital and they are therefore very practised at operating on rheumatology patients. I know from conversations with them that some orthopaedic surgeons are not keen to take on RA patients as they just don’t have the specific knowledge required to understand the RA implications. Do your team have good communication with your RA team?

I am positive that he needs much stronger medication indeed. He is meant to call the nurse at 13:00 today to ask for the next step and steroids.
I never thought of accupunture for this, actually. It is a good call. I will mention it to him. It is worthy a try indeed.
And the communication between the RA team and the knee surgeon.... it does not seem to be any good. It seems like they talked, as the knee surgeon started the appointment mentioning my DH visiting his other consultant. But the surgeon sounded somewhere between annoyed and angry. Not happy about the mobility. Doubtful if it is a good idea to operate now, which we fully get. He did mention that he only has one other patient with similar. We are hoping that the second opinion surgeon has more experience or knowledge or will. We were expecting him to have checked the files, which included a letter from the GP stating the rapid deterioration of health ( which the surgeon took around 7 months to reply to) and the many many many tests my husband has undergone these past 9 months. But my DH state seemed to have taken the surgeon by complete surprise. I do not think he read the file before hand. So it did not feel helpful to us at all. Praying for a better communication on next appointment.
I can imagine that they are extremely busy. I mean, they run their clinics well into the afternoon, past 7 pm. So we do get that they have enormous time constraints and pressure on them. I know they are doing their best, but from the patient point of view it is really demoralising.

If he is in an active flare, and it sounds as if he is, he should be careful about exercises. I am advised to not do them under those circumstances. Steroid injections are a very useful tool in managing inflammation and I wouldn’t hesitate to have one in his situation. Be aware they won’t operate if he has active inflammation as the risk of infection is very high. He needs to get is inflammation down but also be aware they won’t operate within a certain amount of time after a steroid injection again because of the risk of infection. It can be really difficult to navigate all this and I’ve done it but it can get sorted with good communication with the rheumatology team and the surgeon.

That is it. It is looking rather grim now, because comminication is not fluid. And he is suffering.
One person tells him to be careful now and wait till inflamation goes down ( the physios he saw at the beginning of the tear). Next doctor says you need physio and to move more ( knee surgeon)
That is why we are at a bit of a loss. But now determined to get the actual answer, a full plan and better meds. We will be as pushy as we need to be.