Rheumy telephone appointment earlier

[bubblyalex]

As most of you know I’ve been struggling despite the steroid injections into the knees and starting Sulfasalazine.

I had my follow up with my rheumatologist earlier this afternoon and the upshot is that the steroid injections lasted all of three weeks. The Sulfasalazine she was hoping would have had some effect starting by now (I am in my 8th week on 3 tabs twice a day) but given how bad I am and the high pred dose she feels that even if it suddenly starts having an impact it isn’t going to be sufficient to put me in a position where I can be well enough and come down let alone off the pred naproxen and codeine.

Soooo she wants me to start methotrexate 15mg, folic acid and adcal on top of the Sulfasalazine. She wanted me to go for injections but honestly the idea of injecting myself is too scary for words. I really don’t think I could do it so we are going the pills route.

I really like my rheumatologist and she said that at the very least she would not expect me to be worse than when I saw her 8 weeks ago and with my crp climbing. She also said that if I am going to have side effects they will appear quickly so I will know if I can’t manage. She also said taking them during the week means that they are about to be able to help with side effects.

Just wondered what anyone one else thinks and if you have any advice for me because I was thinking about starting them tomorrow.

She also wants me to have an iron infusion because I have anaemia and low iron stores.

[springcross]

I would say the sooner you start them the better as MTX takes up to three months to take full effect. Is the Adcal for your knee or is it because you are taking Esomeprazole? The injections could have been a doddle for you ba, I know it sounds daunting and I felt like that first of all but I am so glad that my rheumy doctor recommended it (because of my stomach sensitivity). I'm glad you have had your appointment and you now have something to look forward to. All the best with it all. xx

[bubblyalex in reply to springcross]

The Adcal (VitD and calcium) is because I’ve been on pred so long - since Jan at 20mg and its an osteoporosis risk. I’m way too scared of needles 😬

[helixhelix]

MTX has been great for me. The first weeks I felt a bit muggy the day after, and my hair thinned slightly. Bit all that wore off as the drug started to work. It got me into remission, so it is my friend.

Try not to overthink it, and just do it. It takes weeks to work so the sooner you start...

Perhaps take in the evening on a day when you can have a lie in the next morning?

[bubblyalex in reply to helixhelix]

Thank you Helix. You’ve answered the question I forgot to ask and about when to take them. 😊👍🏻

[Hidden]

The sooner you get on the mtx the better, sounds like you're in a bad flare. I didn't do well on one drug, always needed 3 and that didn't last too long and I was waiting for biologics to be invented.

I found the mtx tablets made me sick but not the injections. Often with drugs the side effects go after a few weeks. Mtx can take up to 12 weeks to work.

I hope it works well for you and you can wean off the pred. 🤞

[bubblyalex in reply to Hidden]

Not helped by my thinking I could try using my static exercise bike. Second day running of only 5 mins on the lowest setting and now my right knee is absolutely screeching with pain 🤦🏻‍♀️ when will I learn! 😬

Must admit I was looking more about the injections and reading the replies to Charlie... although it’s too soon to say about side effects for me now thinking that I am being a bit silly about the injections.

More thought required and doing less of the dumb things that make things worse 🤨😆

[Hidden in reply to bubblyalex]

Not silly at all phobias and fears are awful. I have a fear of heights. Try the tablets see how you get on. X x

[jacbub103]

This is the journey I was on 3 years ago, the medication you have been given failed for me and while this was happening my knees were getting worse until I couldn’t walk , finally when they did sent me for X-ray on my knees they were both shot, 2 new knee replacements later new medication and I’m good to go now , it’s a road to travel .

[bubblyalex in reply to jacbub103]

It sure is a road to travel isn’t it. I’m so glad you’re ok now.

[Piggyinthecraftroom in reply to bubblyalex]

I had a similar experience to jacbub with my knees. Saw an orthopaedic consultant who said they were totally worn out and recommended replacement but I didn’t want to go that route. So after being given biologics and lots of physio and bloody mindedness I can now walk again very well although admittedly no more than a mile or so.

Meds now include sulphasalazine, 20mg oral mtx, folic acid, amitriptyline at night and weekly sub cut Benepali.

Dropped hydroxyl a while ago and Pred very early on.

[Hidden]

Your rheumy sounds very good. Go for it! I've had no side-effects from MTX, not even when I was taking 25mg per week. I also had to take iron at the beginning and in all honesty it were less pleasant than the MTX, but not terrible. I took the iron for around 6 months and stopped when it had done its work. Don't be afraid to try all these things. If you are unlucky and can't tolerate them, it sounds as if your rheumy will be sympathetic and deal with it quickly.

You're right to keep the knee moving, but not to the extent that it causes you so much pain. Cut down, go slower, but don't stop. I hope things work out well.