Diagnosis update for you all nearly a year on - LUPUS UK

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Diagnosis update for you all nearly a year on

Hi guys, so I promised I would update my journey here with how I got on after needing a second opinion and attending The Kellgren Centre at Manchester. Well over the last few months I’ve been having other various tests and then saw Dr Parker again a few weeks ago. He said he’s even more certain now that I have Sjogrens. This was followed by a letter from him confirming there was enough evidence to diagnose. So I’ve not got lupus, I’ve got sjogrens, I know a lot can overlap with the light sensitivity, fatigue etc etc. I’m currently trialing hydroxychloroquine even tho he told me he didn’t know of it would help any of my symptoms. I think I’m currently experiencing side effects that aren’t very nice but it’s only been 3 weeks I really don’t want to give up on it yet although I do wonder whether it’s best to go the medicine route or not, seems very little is still known about it all even with the top consultants. I’ve been part of a research study so far tho so that’s all going in the right direction. I just hope they can continue to learn and find better treatments for all these illnesses. Love to you all.

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Make sure that the hydroxychloroquine is from Zentiva other makes can have awful side effects

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Ohh thanks mine is by Bristol laboratories 🤷🏼‍♀️ crazy that the fillers can make a difference. I’ve got headaches, mood changes, itchy all over, stomach problems, feel like a zombie! My eyes are worse as well.

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Hi if I were you I would check what others have put on their previous comments and then discuss it with your GP, they would have to put Zentiva type. on your prescription, the pharmacies like to give out the cheaper ones, good luck

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Hope you've had your eyes tested littlemisssunshine. I too am having side effect problems with Hydroxy on the right brand but need to persevere with it!. You must be relieved to finally have a diagnosis even though it's Sjogren's not lupus!. Do hope Hydroxy helps your symptoms. Keep us posted how you get on. X

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I’ve not took my dose today I couldn’t cope with it anymore I can’t function, seeing my GP tomorrow hopefully if I can get in. What side effects are you experiencing even on the right brand? Yeah relief followed by well now what haha it’s hard trying to figure out if medicine seems the way to go or not xx

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Good luck tomorrow littlemisssunshine, hope you see your GP. Has your Rheumy dept got nurses you could phone and ask?. Mine has and they've helped me with trying different Hydroxy doses. Side effects I'm getting are strong headache, nausea and dizziness. It does come on but goes more quickly now I'm just taking 200 mg a day!. It will take a while for your diagnosis to sink in specially if you've fought for it a long time and expected it to be lupus!. It's a big adjustment. Take care and keep us posted. Xx

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Yeah the rhuematology nurse phoned me back yesterday she said to stop and have a break until these symptoms settle down hopefully in a week or 2 and then just try 200mg a day, if same thing happens they said ring back and they’ll get me in for a review as it clearly won’t be suiting me. Not took any since Tuesday and slowly improving. I just don’t know if I want to go down this medication route full stop. Unless it can help my eyes and light sensitivity. Might need to just have a good think for a while. I can’t put my trust and faith into something fully when I’m told they don’t even know what it will help with 🤷🏼‍♀️

I only briefly expected lupus following the ANA, anti RO results as it linked to both and came on here for advice as others had similar symptoms, but sjogrens has been the one mentioned to me from the get go seeing the rheumatologist so no shock there for me just wanted to update people now it’s been confirmed.

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I'm glad littlemisssunshine that you've access to Rheumy nurses and they gave you good advice about Hydroxy. Glad the side effects are going and I hope you tolerate it ok when you try 200 mg a day. I'm on that dose now on advice of the Rhdumy nurses and getting side effects again!. It builds up and then I have a problem!. Maybe ringing them myself next week!. It's so frustrating as the drug has worked well allowing me to reduce steroids and I don't want to go back to being poorly!. I do understand your dilemma and agree maybe it's good to have thinking time !. Sjogren's is more difficult to treat than lupus, must have been a surprise to get that diagnosis rather than lupus specially as the antibody tests pointed to lupus!. Would a second opinion help I wonder?. Great you updated us and I hope you'll keep us posted what happens next!. Good luck with it all. X

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Oh no sorry you’re still having side effects on the lower dose, that’s what I’m worried about now. Def ring them then if it’s becoming too much! I’ve not been out the house this week as it has made me so unwell just hope it doesn’t take forever to leave my system. My new CBD oil just came so hoping that will help 🤗

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Were you taking one of the better Hydroxy brands little miss sunshine, zentiva or black rock?. I am and having a particularly tough day today with it!. So disappointing, been struggling 3 months now!. Will phone Monday as I'm due a review like you. I should think it won't take too long for it to leave your system, that's something we're not really told isn't it?. Don't mix it with the CBD oil, but I hope it helps you when you try it. Be interested how you get on with it. Best of luck Xx

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I’ve just got the Bristol one, I believe that’s not a great one going off info on here. Which brand have you got? I’ve rang and asked my GP if they could do a new px for me with Zentiva but we’ll see how lucky I get with that I don’t know if she’ll need Dr Parker’s say so but thought no harm in asking, not like I’m asking for a different med altogether. Right now with how this has made me feel I don’t want to take it again. Another nice person replying on here said there’s no meds to help with sjogrens sicca and fatigue and they are the main things I need relief from so I’m thinking of just sticking with my alternative therapies path.

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I've got the Blackrock one littlemisssunshine and Boots said they'd keep a note and always give it me as GP just changed my prescription ok. You shouldn't have a problem either. I found the Bristol one very upsetting as had nasty aftertaste with it. Hope your better with Zentiva. Do understand your thoughts re sticking to alternative treatments as there's so little for Sjogren's sadly!. Everything is worth a try!. Keep us posted how you get on. Xx

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Thank you misty I will do. I hope your side effects ease off or be offered an alternative xx

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Thanks littlemisssunshine. I didnt take a pill yesterday and side effects are much better so will have to speak to them!. Will let you know how I get on and good luck for you too. Xx

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Hi littlemisssunshine

How are you getting on with Hydroxy or the CBD oil?. I do hope your getting benefit without the side effects!. I just thought I'd tell you I managed to take Hydroxy 200 mg for six weeks with some side effects but it was manageable!. They've now built up and I've spoken to the Rhrumy nurses who say try every other day!. They're going to speak to my Consuktant tomorrow and may put me on another drug. She will phone by Friday with outcome!. Do hope your feeling better. X

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That’s good I’m glad you’ve been able to tolerate it better now, what side effects are you left with on that lower dose? I’m still on a break from it, it’s been a rough few weeks. I’ve been told it can stay in your system a while even though I only took it for a few weeks! Heard some awful things about it. My new cbd oil was an indica strain, I’ve been taking sativa strain one for a few years now but I remember having greater benefit from an indica one when I very first tried cbd oil, it’s typically the more expensive though so that’s why I’ve stuck with sativa strain longer. Helped my pain for sure. Wish they’d just legalise the proper stuff in the U.K. already!

How long have you been on steroids? I didn’t tolerate them well either, my body is so sensitive it’s annoying. I started the AIP diet last week as well so will update on that as time goes on xx

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Hi littlemisssunshine

I'm sorry that the effects of Hydroxy have been very long lasting for you. A lot of these drugs can stay in our systems a long time, doctors don't really tell us this!. I've still had problems with the headache and dizziness , some nausea but it's improved!.

I wish that pain clinics would be more willing to offer CBD oil. They don't think the evidence of benefit is strong enough yet so don't !. I'd rather try with their backing !. I guess it will change!.

I've been on steroids 27 years at varying doses and am starting to get side effects so must be on lowest dose possible or maybe come off completely!. I'm pleased thanks to Hydroxy Ive made it to 5.5 mg. a dose I've never been on. Im sorry you couldn't take them either but you've been spared their horrid side effects like osteoporosis or cataracts and diabetes. But I will say if properly managed these can be mitigated with the right care!. I hope the AID isn't too difficult to do and benefits you. How long have you been ill?. Keep us postedXx

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Gosh that’s a long time to be on them isn’t it. How old were you when you first got unwell? I’ve been unwell for 4 years now, all seemed to start after I had shingles in 2014 I was 27 yrs old. The Autoimmune Protocol diet is similar to paleo but a bit stricter for the first phase. Im used to eating clean like this so I’ve found it ok, the only difficult bit is not being able to have tomatoes, I’d be able to have lots more recipes just from the addition of tomatoes, but i’m sticking with it. I’m back at the eye hospital this Thursday I’m hoping they can help me more. The symptoms I get with my eyes heavily impact my life x

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I'm sorry littlemisssunshine your life changed after shingles!. You were young too!. Nasty virus that is!. Hope you don't still have the neuralgia. I hope the AID helps you, glad your coping with doing it as it sounds very restrictive!. I'm sorry you have such serious eye problems!. Was that caused by Hydroxy as maybe you weren't a candidate for trying it if they weren't?. I do hope your appointment goes well on Thursday and you get improvements!. Our eyes are so important!. I was 14 years old when my illness started, young I guess to have your life changed!. I've got an important pain appointment tomorrow!. Fingers crossed for us both. Xx

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Wow yes that is extremely young! These illnesses just plain don’t care how old we are and what are plans are for life do they. No I’ve had my eye problems for years now it’s the main reason I am unable to work it effects me that much. When the eye problems came that’s when it all went serious and my life was changed so much, it’s all linked with the light sensitivity so this is why it’s my worst symptom for me.

I had the shingles pain and rash on my left side of my stomach, I get the odd twinge in that area since but haven’t noticed it in a while and thankfully isn’t something that requires medication as it doesn’t bother me really.

I really hope your pain appointment goes how you hope tomorrow xx

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I'm really sorry littlemisssunshine your eyes are so bad due to light sensitivity and that you can't work because of it!. Our eyes are so badly needed. Oh boy our lives really were changed by this illness when young!.it just seems to go on and on!. I haven't been well enough to work , do a voluntary job when I can!. Have you thought about joining the light sensitivity group Eclipse?.

I've got a very painful second toe and I was hoping for help from my pain Consuktant but learn't today they only cover nerves!. She's recommended trying a different painkiller on it and wondered why I haven't had a steroid injection into the joint !. Off to my Rheumy begin Sept as I want to avoid an op but can't cope with the pain!. Wondering if it's the Orthapaedics or my Rheumy who could do the injection?. Pain Consuktant said she'd liaise with the Orthapaedic Consuktant if I do have to have the op!. A lot of help as far as she can which I hoped for!. Do hope your appt on Thursday goes well, let me know how you get on. Xx

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🤷🏼‍♀️ According to the sjogrens info site it is....In Sjögren's, Hydroxychloroquine is used to treat many symptoms of Sjögren's including fatigue, joint symptoms of arthritis and arthralgias (joint pain), dry mouth and dry eyes. Similar to its use in systemic lupus erythematosus, many clinicians feel that it is useful in reducing general Sjögren's “disease activity.”

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Hi phillippo,

The prescribing physician will be very aware of this and the new guidelines from the Royal College of Ophthalmologists have been implemented to mitigate the risk of this potential side effect.

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I had all these symptoms. It has taken me 3 attempts to tolerate it. X

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I don’t know I can’t answer that unfortunately this is the treatment plan he’s started with, he said there’s more so 🤷🏼‍♀️ Funnily enough the research study they asked me to participate in was a lupus one which confused me, but so far that has never been mentioned to me in any consultation or following letters.

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Thank you, they are scary drugs anyway. This was prescribed by Dr Parker at the kellgren centre of rheumatology in Manchester. I’ve not took another dose today anyway I couldn’t cope with the awful side effects. I’ve had a migraine from hell, stomach issues, itchiness, mood changes, zombie feeling. I’ll take my regular flare over this and they’re hell anyway.

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The Kellgren Centre have a special nurse phone line. They are very efficient in getting back to you. If you leave a message on their answer machine they will phone you back and help.

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The Kellgren Centre is one of three specialist Lupus Centres in the country. They are involved in medical studies which help drive better help for autoimmune problems.

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That’s why I chose to go there after my first rhuematology flop 🤗

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Yeah I phoned and left a message with them yesterday.

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Hi Littlemisssunshine87,

Sorry to hear that you have been experiencing such awful side effects. I saw somewhere that you are currently taking the Bristol version of hydroxychloroquine. You may find that you could tolerate the Zentiva version better as many people don't have any side effects on that one. You can learn more about this at lupusuk.org.uk/hydroxychlor...

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Excuse me but what’s with “only” have Sjögren’s? It’s an equally serious systemic disease and there is no “just” about it. Littlemiss.. has told us she was put on it by a consultant rheumatologist for Sjögren’s and is part of a research programme so clearly it is used.

Hydroxy is not a very powerful drug compared to the ones used for Rheumatoid Arthritis - which can often cross over with Sjögren’s. It isn’t an immunosuppressant like Methotrexate, Azathioprine, Sulfasalazine or Myciphenolate - all of which I’ve taken and all of which require regular blood monitoring.

The main risk of Hydroxichloraquine is to the eyes but otherwise it’s well tolerated and works well for many with mild RA, Lupus and Sjögren’s.

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Yes it certainly isn’t ‘just’ or ‘only’ to me, no matter the name the symptoms have completely changed and ruined my life as I knew it. Thank you for your knowledge and responses I appreciate it x

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They might be - but each person is different. It helped me when I was on it with Methotrexate but my rheumy told me that it probably wouldn’t be enough on its own. RA is a tough nut to crack and many aren’t offered Hydroxy because it’s thought they need stronger drugs - immunesuppression, biologics etc

He later changed his mind when I started to have severe pain from small fibre neuropathy and took me off both, one at a time. When the SFN continued to progress he put me back on it just on its own and it really helped with the pain and reduced my inflammation levels dramatically. But then I developed painful hives and facial swelling and finally stopped taking it and the hives etc disappeared within 24 hours so that was that.

Personally I know I’m better off avoiding these drugs now as I’m very allergic. But steroids do help my neurological and other symptoms and I would never tell anyone here that a drug they had been prescribed by a consultant rheumatologist was not appropriate for Sjögren’s. There is one regular member here who is on Rituximab and Hydroxy for primary Sjögren’s.

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I am going to add to this 😬. I am under guys hospital. Each person is normally started on hydroQ as it is the most gentle of medications out of all which is proven to aid relief of some symptoms of autoimmune illnesses.

Guys current approach with me is to determine how much of my illness can be managed with hydroQ alone.

I can’t see any reason why a rheumatologist elsewhere would not try this approach with Sjogrens.

At the end of the day, these illnesses fall under the same umbrella ☂️. It’s got to be worth the try.

X

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Lisalou yes you are right - most rheumatologists prescribe Hydroxy for Sjögren’s similarly as they do for Lupus as a first line disease modifier. I’m not sure what’s with all the drama and inaccuracy here about “it’s a very powerful drug not used for Sjögren’s” but I can say categorically that it is used for both. Everyone I know with Sjögren’s as their main disease is offered it or has tried it or takes it - usually to try and help the systemic pain side of things.

This may change as more studies are done but certainly it’s been the case for the 8 years I’ve been a patient in the rheumatology world for. Xx

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Well said Twitchytoes!

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Hi Hidden,

Hydroxychloroquine is considered a very safe drug and most people tolerate it well with few or no side effects (although we know certain versions can be tolerated better than others for many - lupusuk.org.uk/hydroxychlor...

Hydroxychloroquine may often be prescribed by a rheumatologist initially, but further prescriptions are made by the GP. It is not like some immunosuppressive treatments (such as methotrexate and mycophenolate) which must be under a shared care agreement.

Littlemisssunshine87 is under the care of an excellent consultant who will have carefully considered the potential risk of side effects and the possible benefit of this treatment. It is worth remembering that the diagnosis of connective tissue diseases is not always black and white.

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Yes it is used as a first line treatment for Sjögren’s?! I use an international Sjögren’s Facebook support group, Sjögren’s World forums, regularly attend BSSA group meetings and also read a lot about it. Most people are on or have tried Plaquenil/ Hydroxichloraquine.

I had to come off it after 18 months because it gave me a slow form of anaphylaxis. But many find it quite effective - especially for the pain.

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It’s an equally serious systemic disease and there is no “just” about it! It has damaged my nervous system, my brain, my liver and my kidneys so if Hydroxichloraquine is tolerated then it’s the main treatment offered for Sjögren’s, similarly to Lupus,

Littlemiss has told us she was put on it by a consultant rheumatologist for Sjögren’s and is part of a research programme so clearly it is used for primary Sjögren’s and she is being monitored.

Hydroxy is not a very powerful drug compared to the ones used for Rheumatoid Arthritis - which can often cross over with Sjögren’s. It isn’t an immunosuppressant like Methotrexate, Azathioprine, Sulfasalazine or Myciphenolate - all of which I’ve taken and all of which require regular blood monitoring.

The main risk of Hydroxichloraquine is to the eyes and, as you say, more is emerging about this but anyone who takes it for any rheumatic disease is equally at risk of retinopathy. But otherwise it’s well tolerated and works well for many with mild RA, Lupus and Sjögren’s I believe. If this has changed since I was put on it then I’m guessing the potential risks apply as much to all of us, not just Sjögren’s. As always with these medications it’s a question of balancing risk of drug against risk of the disease progressing uncontrolled.

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Yes I have Sjögren’s and I do know quite a lot about it!

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Philippo it may be that many with RA and SS or Lupus and Sjögren’s will not realise that it’s the Sjögren’s causing the pain, particularly if it is neuropathy or stomach related or fatigue - which is usually pretty much untreatable in Sjögren’s. So drugs may help put people into remission but it’s less likely, if you have Sjögren’s, that your sicca or fatigue will ever remit. But they often don’t progress either.

However a person with one autoimmune disease is at higher risk of developing another. So a person with Sjögren’s might go on to develop Lupus and same the other way round. But it’s far from inevitable. Of course many of us here have shades of Lupus rather than full blown SLE - similarly to the way many on Sjögren’s Facebook groups have Lupus or UCTD or MCTD or Scleroderma and Vasculitis as well. One disease might remit but the other may progress so it’s almost impossible to separate out these out even for rheumatologists. Most of the drugs we know about are used for all rheumatic diseases not just Lupus.

If people are posting here often then it’s unlikely that they feel particularly well or fortunate - particularly if they don’t yet know what’s wrong?! Indeed it could be argued that those who have immunology bloods reflecting their autoimmune disease are luckier because there is more chance of straight forward diagnosis and that treatments will be effective. Perhaps this is why these people don’t post here as often?

Sorry Hydroxy is giving you eye problems. There are other meds that can help hopefully 🙂

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From the nhs link you have posted here:

“A medication called hydroxychloroquine is sometimes recommended by Sjögren's syndrome specialists as a treatment for joint pain or stiffness if other methods haven't helped.

But it isn't suitable for everyone and can take several months to work. It can also cause side effects such as tummy pain and feeling sick”

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nhs.uk › conditions › tr...

Sjögren's syndrome - Treatment - NHS

A medication called hydroxychloroquine is sometimes recommended by Sjögren's syndrome specialists as a treatment for joint pain or stiffness ...

info.sjogrens.org › ask-the-expe...

Web results

Ask the Expert: Plaquenil and Sjögren's - Connect with the SSF

23 May 2016 · Plaquenil (hydroxychloroquine) is a medication that has been used for many years to help musculoskeletal symptoms and fatigue in patients with autoimmune conditions such as rheumatoid arthritis, lupus and Sjögren's.

nyulangone.org › treatments

Medications for Sjogren's Syndrome | NYU Langone Health

It's used in people with Sjogren's syndrome, rheumatoid arthritis, and lupus to relieve joint pain, fatigue, and rashes. It may take up to 12 weeks for you to notice the effects of hydroxychloroquine. ... This medication is effective in treating joint inflammation in conditions such as rheumatoid arthritis.

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I mean that it works in the way that Hydroxy works for Lupus and RA ie it’s prescribed as a disease modifying antirheumatic drug - and pain is part of the inflammatory process affecting many of us who have rheumatic diseases. Sjögren’s is no different to Lupus in respect of pain.

The main difference is that Sjogrens is less treatable than the others due to the inherent viscosity - which no medicine so far can modify. However steroids and dmards can and do help with the pain of arthralgia / arthritis

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I was on it for 18 months but it made me extremely itchy with hives and finally made my face and lips swell so I had to stop.

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I was itchy all over on it, especially when I got out of the bath or shower, I had to stop taking it in the end

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Ohh I couldn’t stop itching in the night drove me bonkers. It’s caused all sorts of horrible effects I feel like it’s undone all my hard work so far.

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Talk to your doctor about your concerns. More studies are needed but two so far have resulted in showing that HCQ was no better at treating dry eye and mouth than placebo, it had less effect compared to placebo for treating fatigue but did prove stronger at treating joint pain than placebo. ncbi.nlm.nih.gov/pmc/articl...

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Thank you Roarah. I wasn’t aware what exactly it was supposed to be doing for me as lupus and it’s medications effect everyone different. It doesn’t do a thing for my mucous membranes (eyes, nose, mouth, lungs) but I can sure tell when I’m off of it in my joints. I feel like the Tin Man in Oz before he gets oiled!

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HCQ does lower ESR and many antibodies including Antiphospholipids, so it is very important for some and many SS patients and lupus patients have RA, high titers of Antiphospholipids antibodies and elevated ESR so it would than merit the risks and side effects.

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Is the ‘someone just took all the air out of my balloon’ the hcq or the disease? I don’t recall this happening before I started the medicine but I was younger with less disease progression.

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HCQ toxicity can build up the longer you are on it for. Xx

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Yeah my rheumatologist warned me it may not help my eyes, in fact they are worse now as a side effect. Don’t see the point in taking it if it can’t help that or my fatigue.

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My team, I have a neuro, hemo and rheumie, talked about adding HCQ based more about my serum numbers than symptoms and if my antibodies were above moderate and if ESR was elevated they would put me on it but my numbers last visit were very low and even some turned negative so they are not putting me on it at this time. I will be retested in September. If my ESR were high or my joints were worse I would try it. You have to weigh the benefits vs the risk individually for each person. Good luck. Xo

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Hi Roarah,

I wouldn't advise any one to 'skip' their medication without first discussing it with their doctor. As I have outlined in comments above, the side effects from the hydroxychloroquine could be the result of the version currently being taken. It is always best to speak to the prescribing doctor about side effects rather than stopping medication on your own.

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Sorry, you are 100 percent correct I will not do that again and I will delete that part. Thankyou.

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Thanks Roarah :)

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My eyes are getting worse with no testable proof. I’m just not sure if it’s slow progressing of age and disease or HCQ. I can’t take most of the other stuff because I’ve had brain hemorrhages in the past. It gets so confusing and overwhelming. I want to pretend it’s not me.

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My eyes have been worse since on this med. it’s hard to know what to do for the best isn’t it x

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Ask your optician to check - they can tell if it’s the HCQ or sicca and should even be able to contact your rheumy on your behalf if it’s drug related x

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Thank you. Opticians have been useless for me so far but I’m under the eye hospital through my rheumatologist referral, I’m back with them on 22nd of this month thankfully. Their findings are what helped my rheumatologist confirm the sjogrens diagnose x

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An optician or an eye doctor would be able to determine whether your eyes are worse due to sicca or to HCQ. If dryness then the only thing that can help is good, more frequent topical treatments ie preservative free drops, applying heat for 20 minutes daily and massaging lids afterwards, gels or ointment applied overnight.

Possibly you might benefit from punctual plugs if you haven’t already had these? They may feel worse but the surfaces are not actually damaged as apparently the two don’t necessarily tarry. It’s definitely worth asking about more effective drops though because advances have been made to include immunesuppressant drops and serum drops that can be made from our own serum.

Sadly there are no systemic treatments to help with sicca or fatigue yet.

But there is often much more to both Lupus and Sjögren’s than sicca so the HCQ is prescribed for the extra glandular features not sicca. X

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