any advice welcome… : I was diagnosed in January 202... - NRAS

NRAS

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any advice welcome…

Star307 profile image
11 Replies

I was diagnosed in January 2022, I had flares every couple of months. In December my pain started to get a lot worse I now have pain everyday in my hands and someday my knees, feet and shoulders. In somedays are a real struggle. I was given a steroid injection and prescribed hydroxychloroquine sulfate. But my pain has just got worse. If I take pankillers recent one prescribed Etoricoxib it dulls the pain but I have to take most days. I have been trying to get some help I have an appointment this month.

I have read lots of articles and called versus arthritis. I am also now logging my pain. I am 44 and feel there must be more help that can be provided other than painkillers or suffering each day in pain? I would welcome any advice …?

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Star307
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11 Replies
kristapb99 profile image
kristapb99

Sorry you are having such a hard time of it. It can often take a long time to arrive at the right drugs for your situation. Hydroxy is often tried initially, it works well for some but not everyone. I hope your appointment is with a rheumatologist? Be sure to let him/her know how much pain you are having. There are many different therapies for RA but it seems there's no way they can tell which one will work for you and just have to keep trying till they hit on it.

Good luck to you and I hope the next drug they try turns out to be "the one" for you!

Gilliancheche profile image
Gilliancheche

There are a lot of medications that can be used for your arthritis. It is early days for you. We all know the despair of constant pain. Most of the drugs take some time before they start working, as in weeks or months and they will try to keep you comfortable with various painkillers until the right medication is found. Keep in touch with you rheumatology team and try to stay positive. Things will get better xx

moon10008 profile image
moon10008

Hi Star, I remember this period so well, I was on Sulfasazaline, Naproxen, increasing doses....pain still getting worse. Steroid orally, injections, then Methotrexate tablets on top....then eventually Methotrexate injection and finally Benepali (the magic one for me)

In all it took 13 months from first hospital visit with RA consultant to the point I could live again with the help of Benepali.

My hospital has an RA helpline, I ended up ringing almost weekly the flares were that frequent and painful. So log it all ...I filled in a diary, I used the usual pain score they ask you, put that on, also how many joints involved, took photos when I could....log morning stiffness, overnight pain etc.

So keep letting your RA team know, they want to help am sure, but unless they know the full extent and the lack of help your current meds are, they can't speed up more help....it's a slow process but you need to advocate for you, be your own best friend and keep on at them.

I found this hard, but pain won, so I did keep ringing them.

It's pure hell, and I really hope you get some alternatives. My Benepali has completely changed my life, and mental health.

Hang in there lovely xx

Madmusiclover profile image
Madmusiclover

nothing to add to what other have said. Just to let you know it took me trying five drugs to get to a sixth one that worked. There is hope. Keep badgering rheumatology. They do not know how you are if you don’t tell them.

Hippo1234567 profile image
Hippo1234567

Hydroxychloroquine takes a few months to work and it’s a horrible wait. If it doesn’t work you should be on another drug. It only got me part way there and then I went on sulfasalazine in addition which has been great. They can use a bit of steroid to bridge the gap while it takes effect.

Star307 profile image
Star307

Thank you so much for your advice and hope that there is the right medication for me! I have called RA nurse team quite often in the last couple of month and been offered painkillers. I get the impression it’s a busy time but I think I need to badger more.

Madmusiclover profile image
Madmusiclover in reply to Star307

Badger away!

AgedCrone profile image
AgedCrone

Sadly getting the right drug to control RA is a lottery, & as you are finding it can take a while. Have you actually told whoever prescribed the Hydroxy that you are not getting any relief with it?

With RA we have to tell our rheumy nurse or the rheumatologist if a drug isn’t helping or they assume that it is…..unfortunately most are too busy to call us to ask.

So get on the phone now…..well ahead of all the upcoming Bank Holidays ….to get some help…..maybe another drug can be added.

My GP surgery have already put out a warning to be sure to order repeat prescription drugs early as they will be closed for all three dates.

helenlw7 profile image
helenlw7

I’m sorry to hear you’re in so much pain. Hopefully your appointment is with a rheumatologist because they’re the only ones who can put you on serious RA meds. It takes a while to get the best cocktail of meds. You may not get rid of your pain completely but it should decrease it, and prevent more joint damage. I was diagnosed in 2004 and still have pain, but it is much less than in the early days.

dtate2016 profile image
dtate2016

Star307: Any advice please....this is a rather long research paper on the tests that have been done on animals by the National Library of Medicine here in the US. ncbi.nlm.nih.gov/pmc/articl...

It is full of scientific names of plants and methodologies that makes it more than difficult to read! However, wading through all of that, I read with particular interest the positive results of Curcumin, (Turmeric), Green Tea, and many traditional Chinese remedies. (So this study is lending credence to what many ancient cultures have been saying all along).

I have had several relatives who have tried turmeric in many forms with positive results. What we have to keep in mind is that Rheumatoid Arthritis is at it's core an autoimmune disease. There are many opinions as to what triggers the autoimmune response. Nothing that I have read pinpoints any one cause. However, all agree that an anti-inflammatory diet / supplements have some positive effects. India has long purported their "Golden Milk" as a cure for arthritis. healthline.com/nutrition/go...

As someone with Hashimotos, I would choose a "milk" other than cow's milk, etc. because of the high iodine content. One of my favorites is flax milk. plantbasedfaqs.com/benefits...

Now that I have reviewed all of these websites, I'm thinking to get back to making my own "Golden Milk" again. It's good for many, many things, and quite tasty, comforting. Hope this is helpful. Please write back with what works for you!

No painkillers ever worked for me and I tried loads. I take Amitriptyline now for nerve pain which was prescribed for my Fibromyalgia. Heat works best for my RA. I take Mtx and Sulf.

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