So I had my first rheumatologist appointment today and I was absolutely terrified, I don’t know why but I was. I went in expecting no answers but instead my doctor said that I definitely have an autoimmune disease but we just need to spend some time figuring out what exactly it is. (My mother has RA, Lupus and Chronic Kidney Disease)
I was relieved to finally know what has been causing me to feel like this but at the same time I’ve been feeling sad as I don’t know what to really expect but at least I’ve got a starting point now!
So today I start on 10mg Predisone and 200mg Hydroxychloroquine for the next month before I go back and see my Rheumatologist at the end of next month, with a few more blood tests in between!
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ClodaghK
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It is great that you feel progress is being made. The Hydroxychloroquine takes a long time to reach therapeutic levels so be prepared for that. Take care
So far my experience is that you need to listen to your body, so for example l was supposed to be tapering my prednisolone every fortnight, l was on 20 mg initially but that didn't work out, but GP and consultant have been great with advice and l have now got down to 6 mg and reducing monthly. Just listen to your body and respond to that.
Great news Clodagh 🤗I am taking both hydroxy and Pred.
When I first started taking hydroxy I experienced heartburn as a side effect..you'll notice on the box that it says u can't take indigestion remedies so I found that taking my meds with a glass of goats milk has helped with that.
Another thing I'll just mention about side effects is the Pred. When I first started it I felt extremely hungry, I couldn't sleep and I felt very angry at times n then tearful. I was in hospital at the time n one of the nurses told me that all of these symptoms are side effects of Pred.
I just wanted to make u aware of these possible side effects so u know.
Good luck n I'm pleased to hear that you're starting treatment 🌈😽😽xx
Thank you so much for the helpful advice! I also have IBS so hoping that these tablets won’t upset things too much for me, but 2 days in and fingers crossed - all good so far! I am also taking Nexazole!
That's great that you're tolerating it 🙌One more thought 🤔 you can have a good look at the lupus UK website and I'm sure that there's support for younger members with Lupus. I'm a member of lupus UK n for £10 per year u get a quarterly newsletter n I've read lots of articles by young women living with lupus.
And of course you're here so u will find out all about all things autoimmune..you'll become an expert!! 🤗🌈😽😽Xx
Yes definitely! Agh amazing, I will definitely check that out thanks for the recommendation! I guess I am lucky in one sense, my mum has lupus so I have grown up around it at home so I know a lot about it but I think when it’s yourself dealing with it, it’s a completely different situation! And everybody is so different too, but this group is amazing x
Oh that's good (well not good) but I'm pleased you've already been living a kinda Lupie life with your mum. 🤗 One more thing..u probably know this already..but hydroxy can make u photosensitive if u aren't already so remember to avoid strong sunlight n take all the necessary precautions. 🌈😽😽Xx
Omg thank you so much you have just answered one of my concerns from yesterday!!! I didn’t realise Hydro could that but now I know why I was extra rashy!
Yes the hydroxychloroquine can take up to 3 months to kick in tho u may notice it starts sooner, we are all different. It can cause tummy upset issues so as others have said I'd take it after some food.But good luck, I had a good response when I very 1st started it 20 yrs ago, then stopped it to have my kids and I'm way down the line treatment wise now Haha! But also back on it after a break.
Yes I’m a little bit worried about the tummy side effects as I also have IBS so my stomach is easily triggered! I am 2 days into the meds and fingers crossed, all good so far. So good to hear that you responded well to it!
I have a lot to learn in the next few years I think!
Oh no I wouldn't worry too much, I think I might have had a bit of tummy gripes but nothing major and not for v long as soon as I took it with food, it's the taking it on an empty stomach that's the problem. I have IBS too so I know what u mean!
I'm sure u will be fine so try not to worry about it and if u have had 2 days worth and been ok u will probably b ok now
Hi Clodagh. You are on the road to getting some answers and the pred and Hydroxy will eventually ease your inflammation. It is entirely normal to feel sad. I know I was devastated. Your life will be different and that is natural to grieve the old you. Sending you a big Cwtch and hoping that you are soon feeling much better xx
I really hope so too, I get emotional thinking how the medicine will hopefully make me feel better and I can have more good days then bad and then I end up getting emotional thinking about how I have to take all these new tablets now and it’s just part of my life - it’s like a rollercoaster!
The first words my Rheumatologist said to me when I walked in the door was “Your a very young woman to be seeing me today” as I am only 22, turning 23 in a few weeks but this is just the start of me getting the treatment I need to start living life feeling a little better and understanding my bad days a bit better too.
You get used to the medication. I was on Hydroxychloroquine for nine years on 400 mg and it really did help me. Have they advised you to have your eyes tested? If not you should. Specsavers do a hospital grade scan of your retina for £10. They can then use this scan as a baseline for future tests as Hydroxychloroquine can cause issues, I had a Rheumatologist up my dose to 600 mg and I developed fluid on the back of my eyes and had to stop it.This is a lovely , supportive group and there is so much experience and expertise here. Please keep us updated as to how you get on. Take care xxx
Yes they have, he has said he will put be in contact with an eye doctor to have them checked! Oh wow that’s sounds very scary. But just so important that we get them checked! I will of course, thank you and you too x x
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