Lupus joys 😘

[Celestine71]

Hi everyone.

My lupus?? has been hanging around for years . Mixed tissue disease at first but my last anti ro result was a lot stronger than before and finally gave in to taking medication, which I was reluctant to because of no firm diagnosis.

My symptoms are extreme fatigue, all my joints hurt but I often have shooting pains in my muscles, weakness. Trouble remembering and explaining things, foggy head, restless legs, prickly heat, reoccurring nose infections. When I overdo things I suffer the next day. Definitely getting worse. Have you any improvements for taking hydroxychloroquine??

Thanks for letting me winge ❤️

[Ryanmac84]

Hiya as someone who's waiting on a diagnosis ,recently had two positive anti s DNA test results and been referred to rheumatologist ,can I ask why your waiting on a diagnosis and is not taking medication an option ?

[Celestine71 in reply to Ryanmac84]

Hi Ryan. Not sure if I understand your question. I assume you are talking about your own journey. For years the rheumatologist have been trying to get me to take meds but because they said mixed tissue disease it made me unsure. My anti ro came back a lot stronger positive than before and the doctor is leaning more toward lupus and I'm so fed up with feeling crap I gave into it . Not sure if this answers your questions 😊

[Celestine71 in reply to Celestine71]

Of course, taking medication is our choice at the end of the day . Mines been going on for years and lupus is difficult to diagnose. I gave in to meds because of slowly getting worse. I hope you find your answers ❤️

[Ryanmac84 in reply to Celestine71]

I'd be like you and would want to know exactly what I have before starting yet more meds.Medication I am taking for other problems is not working as it is so I'd want to know that I really need the medication

[Ryanmac84 in reply to Celestine71]

Does the test results give a clear result of lupus is what I'm asking ?Ive been feeling bad myself the past few years with lots of new conditions and having been told it's suspected I have lupus because of my blood results I'm interested how you haven't had a diasnosis sorry .

[Celestine71 in reply to Ryanmac84]

It's fine. You have to pass certain criteria to have a definite diagnosis and I don't think they like to because it mimics so many other illnesses. Certain blood tests have to be positive plus an overall medical history. One of the reasons for giving in to the meds is they reassured me it wouldn't do me any harm. I have nothing to lose . Fibromyalgia was mentioned a few times, ME in the past. Tell me about your journey 🤣

[Celestine71 in reply to Celestine71]

❤️ not 😂

[Treetop33]

Whinge away. We all need to do it!

I think I can getting a benefit from using hydroxy but I've only been on it for 3 months, so it's very gradual. I'm finding it difficult to reduce pred which may mean it's not kicked in yet. From what I've seen on this forum it works for most, and for some, long term.

[Celestine71]

Hi. This is good to hear. I've been on them for a month . Just wanted to hear it's worth it. The side effects are slowly going. The worse one was itchy skin. Having to use strong anti histamine and steroid cream, hopefully can start reducing these soon ❤️

[whisperit]

I have Undifferentiated Connective Tissue Disease (probably!) - but also Interstitial Lung Disease, ?Sjogren's, and Fibromyalgia.

I started on hydroxychloroquine and prednisolone about 18 months ago. Good things = my severe lung inflammation has almost completely gone and my joint pain has eased. Bad things = my fatigue levels have increased.

My rheumy thinks the treatment has been very effective, and the fatigue is due to Fibromyalgia developing since, as a result of chronic poor sleep. I don't know whether he is right, or course!

Hope that helps x

[Ianrussell69]

Reading this you could be looking at my first post it was almost the same I went in hydroxy for 6 months with not a lot of improvement but it can take 6 to12 months to see improvement after 6 months I was also taking methatrexate one a week and hydroxy 7 days a week massive improvement after 2/3 months but I had dreadful side effects started methatrexate injections 3 months ago and now I get no side effects uther tha a headache for a couple of hrs after taking try the Meds now my Meds are sorted my fatigue is much better and I only get jelly legs now and then instead of every day joint pain is better but still get it along with muscle pain but it has got better hope this helps

[Celestine71 in reply to Ianrussell69]

This is great. Glad you are feeling abit better. I totally understand the jelly legs 😂 I can only keep taking the tablets and hope they kick in soon ❤️

[leslieliesel]

I was just DX'd and started the hydroxychloraquine 2 weeks ago...A VERY bad Chest shoulder and Back rash got my drs attention . He started the Autoimmune testing...My Rash is awful..I have topical cream for it. I think I am getting stomach upset side effects from the medication. I really do not know what to expect as far as helping me with Lupus....I see my Rheum Dr this coming Monday...even though I have seen all of my test results, I expect to hear more about what the tests revealed.....I'm kind of old for this!!!