hello
at this point I have no options but to take medication as the risk of another serious thing happening makes me cautious are there any other options to hydroxychloriquine?
this was advised as the only option other than taking nothing.
Not looking for medical advice just need to research option 1/2/3 as I haven’t been given any.
Hi Millie. Have you tried hydroxychloroquine? It's usually the first drug that we're prescribed but not everyone can tolerate it. It is however the gentlest drug known as an immune modulator. It takes a good long while to get into the system and it does help with some symptoms.Another option is a short course if steroids..prednisolone..if your flaring.
Then there are meds called immunosuppressants..mild chemo drugs that suppress the immune system.
All of these meds do have side effects though.
In my case I was started on hydroxy and steroids and immunosuppression was introduced later. We are all individual..no two of us experience the same symptoms and meds though so you and your doctor have to work out what works for you. 💜🌈🦋Xx
I have been prescribed and tried for a week I’m only taking so I don’t get another blood clot. No one told me I was a risk when I had another autoimmune disease
A week isn't long enough tbh. Did u have side effects? Nausea and heartburn are common..and gastric upsets. It takes a while to get used to and side effects ease over time if you persist. I had heartburn when I first started so I decided to take it with a glass of goats milk and that solved the problem for me .Unfortunately once we have one autoimmune condition..others come along to join the party 😔
AGREE. 💜
Hydroxychloroquine if tolerated (some people have stomach irritation), and no EYE TOXICITY which usually takes 5-10 yrs of use before problems “may”, develop.
But HYDROXYCHLOROQUINE is the SIMPLEST, SAFEST DRUG to keep LUPUS at BAY😊
BENLYSTA (biologic / monoclonal. Antibody) “infusion or injections” are another option to ADD to MEDICINES that can treat Lupus & has been very helpful for many Lupus Patients .
IT takes 4-6 MONTHS to see a difference with HYDROXYCHLOROQUINE & it’s the SAFEST DRUG we can take to keep Lupus Symptoms at Bay and keep more SERIOUS ISSUES from developing.
Lupus is constantly looking for WEAK AREAS in our BODIES for our OVERACTIVE IMMUNE SYSTEM to attack other “organs & body tissues”- thus SYSTEMIC LUPUS erythematosus (SLE).
Are you taking it only to stop blood clots? Or is there other reasons? Because there are a large range of anticoagulant (blood thinners) which are used to stop blood clots, all the DOACs, and NOACs eg Asprin, heprin based drugs ,warfarin or acenocoumarol some examples. But if there is other reason for the Hydroxychloroquine you definitely need to take it for longer to see/ feel if it works
Agreed.
Hydroxychloroquine can take 4 - 6 MONTHS before we see a CHANGE in Lupus symptoms.
It took every bit of 6 months- but made a CLEAR DIFFERNCE in my “JOINT PAIN” (only symptom that can actually be quantified). All other symptoms come & go as Stress, Sun (by mistake), illness, etc may trigger many different symptoms all over body:
IE: MIGRANES, SHORTNESS of Breath, EXTREME FATIGUE, Osteoporosis (prednisone use in the PAST or just LUPUS 🤔), WEATHER CHANGE “sensitivity”, RASHES, CNS LUPUS, and I could go on, and on…..😟🫣🙃💜
hi miliesunny, welcome to the group. I’m assuming you were never prescribed hydroxychloroquine when you were diagnosed with sjogrens? It can take approx 8 weeks before you see any advantage.
It’s disheartening when you think you’ve got your health diagnosis sorted and wham! Along comes another one to join in. (My diagnosis was lupus sle/ sjogrens/sticky blood before other auto immune diseases joined in)
Are you on low dose aspirin or warfarin for the clots? I’m on low dose aspirin and thankfully not had any clots so far.
If you haven’t done already, have a look at lupus uk, they have some useful reading that might help. This group is also a friendly bunch where you can ask questions or just have a big old rant. We’ve all been there. 🙂
thanks they just monitored with sjrogrens and said it was up to me without saying I could get a clot. I woke up with a full leg dvt one morning and had two weeks in intensive care plus surgery. I’ve also had my immune system attack my bladder due to infection and had to be catheterised for two months luckily it works normally the advice at the time was this was for life. There have been other things hence I need to take as I wonder what is next. I’m now on blood thinners for life and tablets to protect me from the blood thinners.
Hi. Have you been tested for an autoimmune disease called antiphospholipid syndrome (abbreviated to APS)? This causes your blood to clot more easily than normal. It often occurs in lupus patients and it has some symptoms other than clots which are very similar to lupus. You are probably on the right treatment for it, warfarin for life (or until they find something better or find a cure) is recommended for APS as it’s more effective in preventing further clots from happening than the newer blood thinners.
HiHave you tried Azathioprine? I used to take Azathioprine, but it severely affected my white blood count. I was then put on Hydroxychloroquine for over 15 years and now I have Toxic retinitis and going blind as result of Hydroxychloroquine and so now I am on only tramadol and paracetamol for pain relief, I do worry incase I have another serious flare as my last 1 left me unable to use my hands, still after 20 years I can't use the lm properly.
You need to discuss medications in more depth with either your lupus nurse if you have 1 or if not your rheumatologist, good luck because it's big decisions to make, good luck l.
that is what worries me my eyes they brushed it off as a non issue.
Re antimalarials I'm just linking to my hydroxychloroquine and mepacrine posts in case they help at all:
healthunlocked.com/lupusuk/...
healthunlocked.com/lupusuk/...
I'm trying to have as lower dose of HCQ as possible. In the winter I think sometimes can agree with rheumy to reduce dose.
I might end up taking the antimalarial mepacrine alongside. Supposed to work well together, complimenting each other.
Hello,
I was on HCQ however was instructed to stop taking it by my Nuro ophthalmologist due to the risk of further vision loss (I am already visually impaired).
I have also tried methotrexate which unfortunately I had an allergic reaction to. Now I have been taking Leflunomide for about six months and it has really helped me with my joint pain
I hope you find a medication that helps you❤️
Thankyou I will try these options - I was given only one option as medication which is why I’m a little frustrated. I’m already on medication which causes osteoporosis to protect my body from blood thinners with a titanium rod in my back so all I need is that and eye issues that is no quality of life
It is very frustrating when you are not given options. The first rheumatologist I saw said the same thing (that HCQ was the only option) however my new rheumatologist and pharmacists which I have spoken to said this is not true!
did you get any reactions to Leflunomide? xx
For the first couple of months I experienced stomach upset and diarrhea which was hard to deal with, but it has improved a lot now and I have been doing well these past couple of months on it 
I have taken 400mg hydroxy for over 17 years with a break of about 6 years when I had azathioprine and then back onto 400mg hydroxy.
Every year I have a hospital eye check up which is very thorough and no changes have been found.
However, on my last visit a few months ago, when the eye specialist inquired about my dosage and the number of years, she advised me to drop to 200mg daily. She said there was nothing to worry about as there is still no change, and she wanted to keep it that way.
I have dropped to 200mg on alternate days with the 400mg and I am feeling the difference. I know I should only be on 200mg daily but it is hard when you cannot move or think properly. I will do it as I have escaped eye problems so far, perhaps in a few days.
I’ve checked I’m on 200mg - I picked the prescription up and it’s in recurring so I’m feeling a little better.
hydroxychloroquine can take up to 6 months to start working xx
Hi Millie,
My connective tissue disease presents with muscle weakness & unfortunately after 2 years on hydroxychloroquine (HCQ) it aggrevated the muscle weakness and I had to stop it. HCQ can cause muscle weakness at high doses, but as I say, in my case, I have muscle weakness as a disease symptom.
There is no NHS available alternative. Other medications have greater risks. There is a drug call Low Dose Naltrexone (LDN) available privately. I'm told it's not expensive & it doesn't work for everyone, but it's an option. I haven't tried it, but I've a friend who has seen great improvement with it.
ldnresearchtrust.org/what-i...
There are also a number of diets available you could try. Medical science is just starting to uncover the links between CTD & the gut.
But my final point is that HCQ is one of the safest medications for CTD. The risk of eye damage is low &, if you have your eyes checked regularly, they will detect an issue before it becomes a problem. I would have stayed on HCQ if I could.
It really works and you may not need to take it forever. The potential side effects of eye damage can be stopped by getting eye exams twice a year. If they see even minor change, you stop it before you get permanent damage. It takes a long time to get those potential side effects.
I found the thing that helped me to stop flares was lifestyle changes. Staying out of the sun, getting more rest, reducing stress, eating right, avoiding wine which has sulfites etc. So Google lifestyle changes for lupus and start practicing them.
I was able to stop taking meds after a couple years of practicing lifestyle changes to avoid flares.
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