I finally got the call from my Rheumy with my results. - NRAS

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I finally got the call from my Rheumy with my results.

Twinks80 profile image
23 Replies

My Rheumy called me this evening with my test results and has confirmed the diagnosis of RA, which I've been preparing myself for this for awhile now. For now she has started me on Hydroxychloroquine ( Plaquenil) once daily and Vit D 50,000 iu for a low Vit D level. Has anyone had any luck with the Plaquenil? I always get nervous starting new medicines.

-Teresa ❤️

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Twinks80
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23 Replies

Yes, my hubby has been on hydroxychloriquine since Jan 2015 and it is a miracle drug for him.

Take care and I hope it works for you :)

Sue

Twinks80 profile image
Twinks80 in reply to

Oh, that makes me feel so good! Thank you! ☺️

amanda46 profile image
amanda46

I Went on that but I had side effects and had to be made to "body rest" for multiple months due to bloods being wrong levels. Sadly I've been on most of the drugs and had reactions blood wise and thus made to come off them

My rheumatologist is starting gold injections on Monday. I believe this is last ditch and I'm assuming (could be wrong obviously) I may have to start on all the drugs again to see if I can tolerate them.. Its great when you hear that these drugs work for people, I'm hitting my 4th yr since diagnosis and yet I'm not under control or even had a snippet of remission- I'm told the pain I have is mostly fibromyalgia and not the rheumatoid but have again had to have steroid injection for swelling and inflammation on my hands! I think its best to go in open minded but also be active in seeking out the side effects of the various drugs you're on and ask questions all the time regardless of how silly you think they are. Know you're body and if something isn't right then call for advice from the rheummy phone helpline number that you would likely have been given

Don't let things go on for ages and ages as it takes longer before you can start new treatment...

Twinks80 profile image
Twinks80 in reply to amanda46

amanda46 im so sorry you're having a hard time finding what works for you 😢..I'm new to all this, but what is the gold injections?

- Teresa

amanda46 profile image
amanda46 in reply to Twinks80

Sorry such a late reply. I've been having a really really tough time.

Gold is literally that. Minute particles of gold go in an injection

I tolerated the two test doses fine butttttttt the first proper dose although lower than it would have gone up to, made me go mental itching and welts over my arms thighs and hands. Turns out that's an allergic reaction :-(((( so now I'm on body rest and hopefully next appointment will get to start something else. Over 4yrs of treatments and still not under control yet.... The gold injection is an olddddd drug protocol from I believe the 60s 70s but again it didn't work for me

How is your treatment going?? Are you lucky and something working for you???

Best wishes Mandy xxxxx

flow4 profile image
flow4

I was put on hydroxy when first diagnosed, and it did seem to help my joints... But unfortunately it also caused psoriasis to flare up in several places, so I switched to methotrexate. I am also nervous about new meds, but I was in a bad state before treatment started, and I have found the benefits far outweigh the side effects.

Twinks80 profile image
Twinks80 in reply to flow4

Do you have RA and Psoriatic arthritis, flow4 ?

flow4 profile image
flow4 in reply to Twinks80

I don't think so. My diagnosis is now PsA and widespread OA (confirmed by two rheumatology departments, including the specialist centre at Chapel Allerton). But I was first diagnosed with RA, and that was my dad's diagnosis, and it has changed a few times, and I don't have 'classic' psoriasis, so I still don't feel certain!

Cathy777 profile image
Cathy777

We are all so uniquely different I have found. I was put on this drug in the first instance but it needed to be alongside methotrexate in my case. I am still on both but have now just added a biological drug. We are all at different levels of RA some more severe than others. You may well find this is the right drug for you and all goes well. But don't be afraid if you need further meds. These have to be tailor made to our needs and it can take a little trial and sometimes error but you will get there. The vit D seems to be almost standard I have found and its not a harsh drug more a complimentary one to help our bones stay healthy. Good luck. Xx

MrsBones123 profile image
MrsBones123

Understand you being a bit nervous about starting new meds, same here (starting Methotrexate next week)

But they might be the ones to help you feel a lot better.

At least we're luckier than patients years ago who had few choices (so I keep telling myself :-)) and if not, well, rheumy will have a plan B. :-)

Good luck to you xxxx

JanWellcome profile image
JanWellcome

Hi, yes I was started on hydroxy first then later added salazphine (sorry about spelling) as well and this combo has worked for me for years with the occasional steroid jab especially at the start, they will carry out lots of blood tests to start to keep an eye on your liver function, with hydroxy you will also need to have a yearly eye test as well, it is rare but can effect your eyes.

With starting any new drug regime it is not unusual to initially have some side effects while your body adjusts to them,so don't immediately think they don't suit you, but if those side effects get worse or don't go away then you should let your rheumy know. It can take several months and maybe a combination to see any benefit, and ask for a steroid jab to help things along if necessary.

I also have low VitD but I was only given 10,000 iu for about 10 weeks then on a daily dose of 800 iu, and it is staggering the difference this has made, I really had no concept of how unwell a vitamin deficiency could make you, and I have a very complex medical situation, and that time had to be the worst I felt which is saying something for me.

I hope this helps, and you feel better soon, and I hope new drug suit you and you don't have too much adjustment.

Jan xox

Fruitandnutcase profile image
Fruitandnutcase

I started on hydroxy round about November last year. I started off on prednisolone which was amazing - I was like Wonder Woman. The idea was that if the steroids worked I would start taking hydroxy. I wasn't sure when to take the hydroxy the I got a copy of the rheumy's letter to my GP and realised that I should have started it as soon as I realised the stetoids were making a difference so I contacted the doctor for a prescription. It just meant that I wad a bit behind and I would say it was a few weeks after the steroids stopped before the hydroxy kicked in.

I don't have any problems with it, pain has gone - it is amazing. You just have to be very careful to get your eyes checked regularly as hydroxy can cause irreversible damage to your eyes - the rheumy probably told you that though. I've got a thing called an Amsler Chart, you look at it and if any of the lines are distorted you need to see someone about it. In spite of that I'm really pleased with the hydroxy.

Seashoreshanty profile image
Seashoreshanty

I was on methotrex and hydroxy, now in remission but still taking hudroxy two per day one in the morning one at night and i am doing really well so good luck, its worked for me

Fcrooks profile image
Fcrooks in reply to Seashoreshanty

How do you know your in remission? Did your rheumy take you off the MTX and your now just doing hydroxy. How long have you know you have RA?

Seashoreshanty profile image
Seashoreshanty in reply to Fcrooks

Had ra since 2014 rhumy has checked bloods my crp level was really down and my esr was low too so inflamation under control. So took me off the methotex last march, so three months, to see if i can be ok with just hydroxy...she said i was in remission. All ok at the moment, just had another blood test and both are higher but nowhere near what it used to be ...... Feeling ok at the moment so fingers crossed!

Fcrooks profile image
Fcrooks in reply to Seashoreshanty

Interesting, I have been on MTX and hydroxy since Sept. 2013. I tested RA positive. All my bloodwork is very good including my ESR & CRP, ALT & AST. I would love to come off MTX as I'm on a very low dose. I'm hoping this will be the case for me on my next visit. Thanks for sharing, Faye

Fcrooks profile image
Fcrooks in reply to Fcrooks

Update from my visit to the doctor. I'm going off MTX and staying on hydroxy for time being. I don't go back to Doctor till October unless I need to and no bloodwork required until prior to my next appointment . She feels I'm in remission as I'm doing very well right now. Hope this remains this way. Stay in touch and let me know how you are doing. Best wishes for your health, Faye

KSee profile image
KSee

Hello.. I'm started on Hydroxychloroquine ...200mg and 400mg on alternate days since Oct '15. Luckily I had mild side effects at the beginning but that went eventually and everything is ok at the moment. I have lung issues so wasn't prescribed MTX. I take Omeprazole and Celebrex for pain relief when I need them.

All the best and hope you find relief soon. X

Simba1992 profile image
Simba1992

For the vit. D to be absorbed properly you should take vit. K2 with it. I was taking high doses of vit. D3 for a long time without getting my D vit level up then I was told by a doctor that it was essential to take K2 together with vit.D. And it had really an effect. Ask your doc about it. Good luck.

Sheila_G profile image
Sheila_G

Hi. Just remember that, as I have said before, it is horses for courses as far as medications are concerned. Don't be scared by anything you hear as your experience may be totally different. I would just like to add a note of caution as far as coming off mxt is concerned. I was doing really well on and had to come off it because of a breathing problem. All was well until 8 weeks in and then I had the worst flare I have ever had which left me with 23 joints badly affected and me being unable to do anything without excruciating pain. The breathing problem turned out to be nothing to do with mxt, so thankfully, I could resume treatment. It took me months to recover from that episode so don't be too hasty to come off it. I would say leave well alone unless of course your blood tests say otherwise.

goldenstar profile image
goldenstar

I got a diagnosis too, and put on the hyrdoxcycline same as you. Im on 400mg twice a day.

embroy profile image
embroy

I have been taking it for 2 years, first on a high dose, ( 400mg)then a year later on a lower dose ( 200mg). I was on a high dose of Vitamin D (20.000) for about a month.

nomoreheels profile image
nomoreheels in reply to embroy

Hiya Arvinder. Just noticed that you’ve replied to this & another 3 year old post, neither have been active on the site for as long. The other one has the username 'Hidden' & a blank/grey avatar, if you see this another time it means that the OP is no longer a member, their account is deleted. Just so you’re not wasting you help/info on someone who won’t see or or may not respond. You can always check how old a post is as it gives an estimation underneath the title, alongside the OP's username.

Hope you're ok & do hope the X-ray comes back clear.

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