Update on lupus journey - medication advice

[Staceylouise90]

Hello All,

I haven’t posted for a while as I was waiting for my first rheumatology appointment which was in January which I’ve already had.

Appointment went well, she repeated all my bloods again and check my organs etc, my DS-DNA came back positive again at 19.

She said most symptoms are similar to lupus and blood work is strongly aimed at Lupus, and she is back Tuesday to confirm my second blood work, on my appointment she ask me to read up on Hydroxychloroquine as she wants to start me on this once those bloods was back which they are.

Since January, my chest (lungs) have calmed which the medication from my consultant, but unfortunately I’ve gone down hill in other ways, which is why I haven’t posted as felt a little low about it all.

My left leg, well is extremely painful along with my new and having difficulties walking, along side bad headaches, temperature, continuous infections I keep picking up.

I have been to the doctors twice this week, today my GP looked at the report from rheumatology and they authorised for me to start colchicine for pains and lesions ulcers I’m currently having and hopfully Tuesday I will start Hydroxychloroquine.

I am really struggling mentally with this, it’s having a real impact on my life... does anyone currently take these medication... and if my leg is arthritis... will it ease. I’m 30 and seems to be attacking my lungs plus my joints and making me really poorly. I’m so much medication now and just don’t know if anything will improve.

Any advice would be great.

Many thanks

[KayHimm]

Hi Stacey -

I have been wondering how you were after the bronchoscopy. It sounds like you are struggling. It may take a while to get you on effective medications. It does sound like you are just now getting started. So there still are many options for you, I hope. That might be a good question for your doctors. What are the possibilities for your particular lupus involvement?

So glad you wrote. Wish you the best of luck. You will likely hear from others with lung involvement who can be more helpful.

Kx

[Jmiller623]

Hi Stacey! I have been on HCQ for about a year now. I’m 35 so still young like you. On avg most people gain maximal effect at 6 mos. Took 3 mos for skin, hair and joint pains (esp right back/leg pain also prohibited me from walking at times) to ease. But it took about 8-9 mos to really help with all the vague symptoms that come with lupus. I’ve always had low white blood cell esp lymphocytes and this also corrected with HCQ so infections have seemed to ease a bit other than chronic EBV. I must say I’m much better on HCQ than when I’m off of it.

For my lungs/respiratory, I’m on steroid inhaler, as needed albuterol, antihistamine and mucinex. This improved my breathing dramatically.

Colchicine is pretty well tolerated with the major side effect being nausea and diarrhea. The diarrhea is usually what limits the dose for most people.

I do hope you find some relief soon. Sounds like you’ve had a go of it. I hope the HCQ works for you! Sending hugs your way. ❤️

[Hidden]

Hi Staceylouise90, sorry to read what you're going through and I totally understand your frustration that you are experiencing. I can't say I've experienced any of your symptoms as everyone is different but what i can say is when I was originally diagnosed with lupus I struggled mentally too and to be honest I still have days now as things have changed when I can't be bothered. I don't take any of the medication you mentioned but I do take loads more. Easier said than done but try stay positive and look to the future, it will get better as time goes by. My friends have never truly listened to me and always thought I was exaggerating whenever I was unwell as it would knock me for six but I feel joining here has been great. Everyone has different symptoms and experiences but we are all here if anyone needs to vent their frustrations. Hope that helps, good luck and please keep in touch how you're doing.

[LH44]

Hi, I've been taken Hydroxychloroquine for nearly 5 years & it's definitely helped me. Takes up to 12 weeks to work & if you ever stop it, 6 months to leave the body. I have mine straight after my dinner & have no stomach upset at all (I know some people do so best with/after food). I'm in my 30s too

Interested to know what your lung issues are as sometimes my lungs feel like they ache when I breathe deeply???! Started like that in 2012 before I got very unwell, not had it a while but seems to have resurfaced recently as have a lot of things going on.

[Pickzie]

Hi. Hydroxychloroquine is a first line treatment. I’ve been taking 400 my a day for 27 years. Takes a few months for you to feel full benefits but on the few occasions I have tried to drop my maintenance dose I definitely feel the difference without it. If you research you’ll come acrosss potential damage to retina but the dose needs to account for your body weight and I have the optician check my retina as part of my annual eye check. I’ve not had any problems in this drug. Wishing you well x

[Bronn]

Hi Staceylouise, Hydroxychlorine was the 1st drug that rheumy tried me on for lupus, it had a dreadful effect on me. I was confined to bed, I was in so much muscle pain in my arms and legs and awful cramps in my stomach 😥 I couldn't lift my arms and my husband had to feed me and put drinks to my mouth. My legs felt like lead and hurt so much 😩 After a week of stopping hydroxychloroquin I felt so much better 😀 Alergy tests afterward proved it was due to the drug. I personally wouldn't recommend it to anyone 😣 I now take mycophonelate mofetil 😄😄😄