New to this...

[Littlegreenie]

Hello

I’ve had many years of pain and various other issues, most recently (last 5 years) developed reynauds, rosacea, nausea, dizziness, scalp psoriasis, fatigue etc; all of which had not been linked. All too often GP focused on mechanical isssues of prolapsed discs in neck or blamed anxiety (I’ve never previously had anxiety until the physical symptoms appeared) and more recently menopause. I struggled for 2 years on pregabilin, which caused weight gain and little else other than increased nausea. Having recently been struck with new pain in hips, lower back, legs and shoulders plus extreme fatigue, the path has changed and GP finally referred me to rheumatologist who did various bloods for the first time. ANA was high, other inflammatory markers are raised and he’s put me on hydrochloroquine as likely lupus diagnosis. I’m partly relieved if everything adds up and there is a treatment path, but I’m not sure what that Is. Ive struggled with meds forever, can’t tolerate nsaids and most opioids etc just make me really sick After 2 weeks I’ve increased the hydrochloroquine and now have painful itchy scalp and red rash on arms etc. Getting really worried that I’m immediately going to be without help again due to my usual intolerances... Am already finding reassurance in this forum but words of advice at this early stage specifically on the hydrochloroquine effectiveness and side effects would be most gratefully received... thank you.

[Lisalou19]

Good morning,

There are many who tolerate hydroQ and report many benefits. Im on my 3rd attempt at trying it.

1st time I started to produce a small blister type rash. 2nd time very sore eyes. And 3rd time a new rash has appeared on my forearms and my eyes feel terribly dry. I’m hoping to get a change in medication

X

[whisperit]

Hello and welcome Littlegreenie

You've had a long journey to get this far. We can only hope you've finally found a sound diagnosis that will lead to some long term relief. As far as HCQ goes, you probably already know that it's one of the most commonly prescribed immune modulators. It seems to have good effectiveness in damping down auto-immune activity across the board and is said to take at least 6-8 weeks before the benefits kick in.

It's also popular because it is generally well tolerated, with few people having major side effects. There are some who can't manage it, though, and you will certainly find posters here who've had to switch to other meds. Some might post a reply to you shortly - otherwise, do search the board for past threads. You might also give your rheumy dept a ring - many have specialist nurses who can advise about things like this in between review appointments?

I think I'm fairly typical in that I got heartburn for the first 2 months or so, but this did settle.

Hope things get much better for you soon x

[Lupiknits in reply to whisperit]

I can’t add much to what whisperit has said. Hydroxy helps me as much as it can. For the first couple of weeks or so, it did make me nauseous and I couldn’t stop scratching all over. I didn’t have any particular skin issues before that though.

[Littlegreenie in reply to Lupiknits]

Thank you. I am itching all over but will stick with it for now and hope this is temporary!

[Lupiknits in reply to Littlegreenie]

I hope it is x

[Krazykat26 in reply to Littlegreenie]

Maybe u could try taking an antihistamine? I take over the counter piriton when I'm itchy which is often as I have cutaneous lupus. It's well worth keeping on with it if u can..hydroxy I mean xx

[Krazykat26]

Hi Littlegreenie n welcome 💐

Ah anxiety n the menopause..that old chestnut!!!

If your ana is high your blood will be further tested for dsdna which will deffo confirm lupus..this can take a few weeks to complete the process.

It's wierd isn't it that when u finally get a diagnosis it's a relief because u knew there was something wrong ages ago..your GP doesn't sound that clued up on autoimmune disorders..but then again not many are!!

U have come to the right place for info, advice, tips on how to manage things.. we're not doctors but we do all live with lupus 24/7 so that must make us experts in some respect!!

Keep a diary of your symptoms so that u can have a record n take photos of your skin rashes so that u can show your rheumy at your next appt.

Hydroxychloroquine was the first drug prescribed when I was diagnosed in 2017 n I have been on it ever since..I had heartburn at first but I decided to take my meds with goats milk n that stopped it. I have to say though that Im quite tolerant with meds..I'm taking more now than I've ever done..wouldn't even take paracetamol in my youth..but your different with your drug intolerances.

Has anyone mentioned photosensitivity to u? Many of us r extremely sensitive to UV rays n we have to wear factor 50+ sunscreen n cover up..hat, sunglasses, long sleeved tops, trousers..even on overcast days!! Hydroxy can increase the risk of photosensitivity so please be aware of that!!

Most importantly...u r not alone!! There's loads of us here all with autoimmune disorders..u can guarantee that if you've got a question..someone will say..yeah I had that too..this is what helped me..or..yeah I've got that n it's the pits!! We all hold each others hands in cyber space..because we r all lupus warriors!!! 🤗🤗🤗Xx

[Littlegreenie in reply to Krazykat26]

Thank you! It is so good hear from others with experience of this illness - and quite shocking how long it seems to take to get to diagnosis and treatment....