I actually met my consultant yesterday finally, (not ... - NRAS

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I actually met my consultant yesterday finally, (not the nurses or one of the team) yayyy

jojoishere profile image

Hi all, she was lovely, and very thorough, she was concerned about my wrists, and shoulders and said the ra is still very active. So she wants to add sulfasalazine, I've been on mxt for 9 weeks, and just changed to 20mg Injections. She also mentioned a biologic, and upped my steroids to 20mg, my wrists have changed shape, and have got lumpy and really hurt.. I've also had a flare up of gastritis which is bad enough, and she wants to see me in 2 weeks time and says she's keeping a very close eye on me. I didn't want to really go on more meds, and don't no much about biologics, can you take them tablet form? Or are they Injections? Would love to hear your thoughts jojo x

35 Replies

Hi jojo. I'm really glad you had such a good f-t-f with your consultant yesterday and it's good to know she's going to be keeping an eye on you. Good luck with your new meds, I hope whatever it is works well for you. 🤞x

Thankyou spring cross x

Great that you liked your consultant and will be seeing her again soon.I can't comment on biologics but having started on Methotrexate (currently on 20mg injections) and Hydroxychloroquine, adding Sulfasalazine last year was, for me, the missing piece of the puzzle.

I'm happy to take whatever my rheumy team suggests so realise that I might move onto biologics at some stage but I'm happy that, for now at least, the DMARD triple therapy is working for me.

With Sulfasalazine, I had some initial nausia (with each dose increase) but it passed after a few days and the only long term side effect for me is the impressively yellow wee! 😂

jojoishere profile image
jojoishere in reply to Boxerlady

This made me 🤣 it will match my yellow tongue, 💛 I hope its my missing piece, and glad things are improving for you 😊

Cavlover profile image
Cavlover in reply to Boxerlady

Yes I found sulfasalazine made a big difference too when I added it. The yellow wee is the only side effect I have had.

Oh yes neon wee is sooooooo spooky🦹🏻‍♀️

Many of us dream of having a Rheumy like yours and getting a F2F consultation!It’s great she’s determined to get your RA under control quickly with whatever drugs you need to avoid irreversible damage to your joints.

Leave it to her to choose what drugs she thinks will help you the most. None of us want to be on any of these RA drugs but our lives are unbearable without them. When we have the right combination many of us can lead relatively pain-free and normal lives.

Good luck. 🤞🏻

Thanks lolabridge, she did mention this, and yes she nos best

There is lots of information on biologics on the NRAS site. Mine is injectable, with a pen, every two weeks. When I started on it it was a syringe so things are much easier now. Don't be afraid to try them if it is what you need. They have transformed my life, I have been on them and stable for over 15 years. Sulfasalazine did nothing for me, except make me feel very down and I also had the impressive yellow wee!

jojoishere profile image
jojoishere in reply to Potatos

That's good to hear and your lifes improved gives me hope

Biologics are a more modern drug. I by-passed that too in that it didn’t work and then was able to go on to a JAK. No regrets. It was a pity I had to trial all the metho, Sulfa, hydroxy etc that others, like me, report ineffective and/or intolerable side effects, but that’s the way the NHS rolls!

Thanks for info, glad things have improved

The very best place for accurate information about the range of drugs available for treatment is the NRAS website.nras.org.uk/information-sup...

It also has some very useful advice for the newly diagnosed. There is a helpline too, if you need one to one advice.

jojoishere profile image
jojoishere in reply to oldtimer

Thankyou

Your rheumatologist seems to be on the ball. Biologics tend to be by injections, but are also often by a pen, kindalike an EpiPen Quitepainless and easy to administer yourself. Best wishes.

jojoishere profile image
jojoishere in reply to Mmrr

Thankyou hope your ok

Mmrr profile image
Mmrr in reply to jojoishere

So long as I take care, I'm doing just fine. Thankyou.

A good consultation goes along way to boost you . I like the sound of your rheumatologist. I’ve been on etanercept which didn’t work for me and no on Baricitinib which suits me and no side effects. My motto is you never know unless you try . You can always stop if it’s not for you and on to the next x

jojoishere profile image
jojoishere in reply to J1707

Thankyou, and yes it does, I can't complain about my care its been very good, I'm so lucky to be honest, especially after reading some other posts. X

You sound a lot like how I started out. I was eventually put on a biologic and it changed my life. From struggling to climb stairs and some days after a full day at work hardly able to move. I was able to stop all the other meds eventually so now I just inject every 2 weeks, I have a healthy diet and plenty of gentle exercise and feel so much better than I did! Oh and no side effects 😁

jojoishere profile image
jojoishere in reply to Bails67

Glad to hear this bails

Well hey there JoJo lovely to hear that take care 😘

Lucky you someone who cares! My rhueummy said sulfasalazine is like putting marzipan on a Christmas cake. Some people don’t like it but it makes a huge difference. This is how I have found it anyway. Also on baricitinib which has been a game changer for me. So take your shopping bag to the chemist! Good luck 👍🏻

😊 thankyou Green (shopping bags at the ready)

Hi jojoishere, do you know whether your meds caused the gastritis? I’ve got it too (and problems with very lumpy wrists). Mine seems to have been caused by the previous medication I was on (Enbrel) and I’m waiting for a gastroscopy to see what’s going on in there. Is your rheumatologist proposing to do anything to alleviate the gastritis at all? Take care, x

jojoishere profile image
jojoishere in reply to Emye343

Hi Emye, I've suffered with my stomach for years, got slow transit constipation ,and hiatus hernia, have colonoscopys and endoscopy every few years, i have to watch everything I eat, there keeping an eye on it as I've just upped the dose of metx.. the first 4 doses didn't seem to have side effects but the last 3 doses my stomach as been awful, what's your symptoms?

Emye343 profile image
Emye343 in reply to jojoishere

Hi jojo,This is the second time I’ve had it - the first time haemorragic gastritis was brought on by nsaids. This time it seems to have been the enbrel. I was on mtx for 3 years and (although I felt pretty ill all the time) my stomach was ok. This time I have almost constant bloating, diarrhea, intermittent nausea and malaise, together with frequent indigestion and tummy ache generally. I’m due to have a gastroscopy next month. Isn’t it horrible when you can’t even have the small pleasure of eating any more? I’ve actually developed an auto immune mouth condition called oral lichen planus too, which consists of mouth sores all over the mouth, among other things. Oh the joys of auto immune! I hope you’re not feeling too bad. X

Chockyuk profile image
Chockyuk in reply to Emye343

I’m sorry to hear that. You are the only other person apart from my ex-husband who I’ve ever heard has it (Lichen Planus), he had it all over his body (and was also diabetic), I didn’t even know it was an autoimmune condition. I really feel for you having that on top of RA. 😔xx

Emye343 profile image
Emye343 in reply to Chockyuk

Hi Chockyuk,It does seem that when you have one immune condition, you tend to gather more, doesn’t it? But I could definitely do without the olp! I hope you are managing ok with your ra. X

Hi JoJo & al' It's interesting to know that you've seen a consultant and been offered or given more medications from Pharmaceutical companies. I haven't been on this RA forum for a while, and so not up to speed on all the meds available etc. I chose not to take hydroxy-c in the end, it made me feel sick and poorly. I decided to accept I have RA and there is very little I can do, really. So I decided to just eat healthy, drink wine, or beer or other health/alcohol in moderate amounts daily, and exercise moderately daily, stretches etc, and swim as often as a pool is available under lock-downs. And just try to do only what I can. I have found it hard to find work, and my partner is not greatly supportive, so I work part-time and assignment agency work to keep going over this last year. have two children, so they keep me busy and I get involved with their schooling (and over the covid-crisis) home learning. Has anyone else decided to go off GP / Consultant prescribed medications? SriShell

Hi Sri, are you not on any medications for your RA?

Hi there 👋I’m glad you had your f2f, it’s much more satisfying and reassuring than the over the phone.

I hope everything goes well from now on.

I don’t know about biologics (haven’t been offered them yet), but I do suffer from all sorts of tummy problems, hence why I can’t take Hydroxychloraquine (which put me in A&E), but oral steroids give me terrible indigestion, so the last few times I ask for the injection, so maybe they don’t help your tummy issues?

Take care and good luck 😘

jojoishere profile image
jojoishere in reply to Chockyuk

Hi sian, hope your ok? That sounds awful about the hydroxy. I will let you no what they decide and how I get on with the biologic, are you back at work yet? I no you have been struggling also. Take care xx

Chockyuk profile image
Chockyuk in reply to jojoishere

Hi Jojo, I was back at work, but have been off again with another flare for 2 weeks 😖

Had a steroid jab on Monday, but still don’t feel that much better, considering last time I had one it was like magic right away 😔

Still, these things are sent to try us.

I’m glad you’ve finally been seen and your Consultant sounds good. Let’s hope you get all sorted and most important, pain free soon 👍👍

x

jojoishere profile image
jojoishere in reply to Chockyuk

Thankyou, sorry your having a rough ride, fingers crossed we will be in a better place soon 😊

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