I wonder what is going on

[Brychni]

Hello all - since stopping both hydroxyc. and MTX on 18th Feb, I hadn't really noticed a difference until a few days ago and wonder if these episodes are connected with stopping meds.

Shoulder and elbows continue to be bad but in the past couple of days the right shoulder and elbow have been off the scale. Like the episode in Tesco a week ago my shoulder was so bad on a long hill walk the other day that I had to stop and pull my arm (with difficulty and a lot of pain) out of my bra strap because it was irritating my shoulder. It didn't make any difference. It was one of those 'I don't know where to put myself' kind of pains which eventually and as usual went all the way down through elbow, wrist and into hands and fingers.

Last night my right elbow was so bad I could hardly sleep and then another thing reared its ugly head: the dreaded gurgling and cough which I haven't had for ages. I'm in no doubt about what it is as I was told by GP before my rheumatology diagnosis: GERD or laryngopharyngeal reflux, classic signs and the inhibitor tablets and extra strength Gaviscon work very well although I was warned I couldn't take them forever. Last night was hideous. I was glugging straight from the Gaviscon bottle and wandering around the house looking for the Volatorol gel which I couldn't find and ended up taking 2 nurofen instead which did the trick.

One of the first things I went to the GP about before rheum diagnosis was bowel issues which as time went by were accompanied by the reflux thing. That's back too and I wonder if this is all connected. It started with a tight throat and slightly bad breath a couple of weeks ago, followed by constipation, followed by the little cough, then diaorrhea and now the watery reflux and being woken up at night. It was so bad that I was slightly worried I would choke.

Shoulder is bad again this morning and seems to be a permanent feature now along with the elbow.

I had thought I was beginning to feel a bit better since stopping the meds but now I am not sure.

My appointment with the private consultant is on 12th April

[nomoreheels]

Oh, ok. I can only give my experience but when I’ve had my meds stopped it's 3 weeks usually to the day, if not a day or so prior, before I feel as though I'm back at square one, & worse as I have other joint involvement since diagnosis.

Roll on your appointment when I hope you have the answers you need.

[Brychni in reply to nomoreheels]

Hi N - that's about right, since the 18th. Interestingly all the things that started happening shortly after diagnosis which subsided are now coming back. Even since writing I have sore heels again, not really bad but noticeable.

[nomoreheels in reply to Brychni]

It's such a right royal pain, but necessary unfortunately in order to start from page one again. Grrr.

[Josephine13halffull]

Why did you stop taking your medication?.

[nomoreheels in reply to Josephine13halffull]

Maybe having a scroll through Brychni's profile page will help answer your question. You'll see it's not been easy for her for a good while now.

[Josephine13halffull in reply to nomoreheels]

I asked the question going on the the post.

[nomoreheels in reply to Josephine13halffull]

Sorry, but it's so involved I couldn't supply a précis.

[Brychni in reply to Josephine13halffull]

Hi Josephine - nomoreheels is right: my exhaustive ;history' is in my bio, I've tried to keep it up to date to help others with going through the same thing. But basically I was diagnosed March last year by ultrasound and not much in the way of classic symptoms. I was told to take the meds in order to reduce the progression of disease. I could expect though to experience worsening of pain etc.I haven't seen the consultant since then but spoken to the nurses a few times who introduced new meds when pains were getting worse.

During my most recent call I was told all my pain was mechanical and that was why the meds weren't working. So I decide to stop taking them. I then managed to get an appointment with the consultant who just said she agreed with the nurse but declined to examine me and said she would send me for another scan to monitor what has happened to the inflammation but that because of covid the service wasn't available.

She said a few other things which sounded a lot like we would see what happens without medication but that was basically it. she said she would refer me to the pain clinic and send me for an ultrasound when available but she had been given no info about when that would be.

The upshot is I am not making a complaint about the fact that my 'disease' has not been monitored as the GP hinted, but have booked a private rheumatologist who will be able to carry out ultrasound.

[Josephine13halffull in reply to Brychni]

Thank you for your reply. I just wanted to know if the Consultant had stopped your Meds. And no I didn't scroll through your profile page as suggested by nomoreheels it is not always possible to scroll through everybody's profile page as you can imagine.

[Marionfromhappydays]

Oh no.

Are you writing everything down so the consultant can see ?

[Brychni in reply to Marionfromhappydays]

Yes, I',m keeping a notebook.

[MoniqueB]

I'm so sorry you're feeling poorly Brychni. Your description "It was one of those 'I don't know where to put myself' kind of pains" really resonated with me.

With regard to stopping MTX, up until two days ago, my latest dose of MTX was on February 15th (I stopped taking the drug for a few weeks because of having my Covid jab). For the first couple of weeks, my RA symptoms seemed well controlled, but they started getting worse and worse. For example, on Sunday, I was awakened by pain in my hands, which, later in the day, moved elsewhere. Today, after taking my MTX on Sunday, I feel quite a bit better. Would you consider restarting your MTX until you see your consultant on 12th April?

[Brychni in reply to MoniqueB]

Hi Monique - the pain moving around that you described sounds just like mine and Marionofhappydays I think gets this too. I am very, very tempted to start taking MTX again but think I will hold out til my appointment as I really want some sort of monitoring of my diagnosis which I haven't had and doesn't look like I'm going to get any time soon.Coincidentally I have just had a Zoom appointment with Migraine consultant and I asked her about the antiphospholipid antibodies I was told I had at my initial rheumatology appointments but that have never been followed up. She advised to take this up with the private consultant and pursue it as there could have been interactions with what she has prescribed me. Thank God I mentioned it.

As for pain management I am mixing it all up!! And madly researching physio but cobbling together exercises for : fingers, hands, wrists, knees, elbows and shoulders is a bit difficult.

😄

[Helen-NRAS Moderator]

I'm sorry to hear about the level of pain and discomfort you are in. If you would like support information or just someone to speak to, our helpline is open every week day from 9.30am to 4.30pm nras.org.uk/helpline/ 0800 298 7650

[Brychni in reply to Helen-NRAS]

thank you

[LoneEra]

So sorry to hear this, I was hoping you’d feel good off your meds 🦋 I’d recommend letting the private consultant know the situation ASAP. He (or she) might be able to bring forward your appointment - or might want to run some bloods or scans while it’s all active.

Otherwise, maybe a short course of steroids could help? Sending you my best wishes 🌼 xx

[Brychni in reply to LoneEra]

Hi L - am I allowed to contact the consultant even before my first consultation?

[LoneEra in reply to Brychni]

Definitely! I'd give their secretary a ring or drop them an email and just explain the situation. You never know - there might be a cancelled appointment that you could take to be seen earlier x

[springcross]

Oh my goodness Brychni, I'm really sorry to hear all this, it all sounds like a horrible nightmare. I really hope you can get some treatment soon and I think LoneEra gave good advice about letting your private consultant know asap. I wish you all the best and hope someone can sort this out for you and soon. xx

[Brychni in reply to springcross]

thank you xx

[Garnacha]

aaw I'm so sorry to read this, I do know when I was told to stop hydroxy within about 5 days I was in absolute agony and like you didn't know what to do with myself, the consultant said to restart taking them, things did improve slightly but think by stopping them caused the catalyst for having all the pain I suffered in December. See if you can contact the consultant or GP and ask if restarting the hydroxy may help tie you over until your appointment if you can't get seen earlier (I was taking the MTX though at the same time).

Hope you get some relief but more importantly answers sooner than later x

[Brychni in reply to Garnacha]

Hi G - why did the consultant tell you to stop the hydroxyc. ?

[Garnacha in reply to Brychni]

I've no idea to be honest, guessed at the time it was because he was putting me on MTX, but as I found out within a couple of days I went downhill pain wise, I rang my local chemist to ask if it would be ok to take hydroxy with the MTX (it's still all new to me what you can and can't take with the meds) and he said it was fine but to let the consultant know, when I e-mailed him he said no problem to start retaking it again x

[Brychni in reply to Garnacha]

I'm so envious of people who can email their consultant. I too felt that initially hydroxychloroquine had done 'something ' although it's such a long time ago and things change so quickly I can't remember what!

[Garnacha in reply to Brychni]

hopefully you'll be able to e-mail the private one you see in April too, might just be worth the fee if you can do so for that added peace of mind, I didn't think it had actually helped until I was told to stop it, the same happened with the etoricoxib when I decided to stop taking that too, guess the specialists do know what they're doing even if sometimes it doesn't seem that way when nothing seems to be getting better but, whilst things may not seem to be improving I'm finding that they must at least keep it at bay, whilst that's good news it doesn't help when you're still in chronic pain x