I was diagnosed with mixed connective tissue disease in March this year. In August I started taking hydroxychloroquine at 200mg. I saw my rhumotolgist about 3 months in and told her I had not noticed a difference. She told me to increase my dose to 400mg which I did.
Fast forward another 2 months and i have developed extreme itchiness. Showering has become hell as that just makes it worse. I switched to cold water which doesn't help raynauds at all!
Saw GP on Monday who prescribed strong antihistamines and told me to speak with my consultant. I finally got through to the nurse yesterday and was given 2 choices. Stop taking it all together or just go down to 200mg.
What do I do?
It hasn't helped my symptoms at all. Just given me dry eyes and extra dry skin and itchiness.
My legs are very weak especially my muscles in my body. They feel very tight and stretched. My ankles are the worst feel like they will give way. My back pain on left hand side lowerside is horrendous. The cold makes my muscles even tighter and painful.
Im getting more and more bedbound as I dont have energy. Cooking a meal is exhausting and painful.
I can work all day (from home) but then going to bed after I finished because I'm exhausted. I'm just very stiff.
I have been diagnosed with hashimoto's disease too but not on any medication as my TSH levels seem to have to stabilised.
I dont have arthritis as they have done scans and ruled that out.
My inflammation markers are high. My GP has asked me to come back in next week. My RBC count is higher too.
Im also under investigation for issues with swalling food. I have been diagnosed with incordinated mid and lower oesophageal contractions. Waiting further tests.
Just so you have the full picture I also have stage 4 endometriosis. With DIE and I am waiting on a full hysterectomy, bowel resection and bladder resection.
Any advice/help on what to ask or do next appreciated please.
Thanks 😊 🙏
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Awwy
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I’m sorry things are so tough for you. My guess is that your complex problem is related to your existing autoimmune overlap syndrome being under treated - especially the untreated Hashimoto’s.
I was fortunate to have this diagnosed decades ago by a good GP and have been on varying doses of Levothyroxine ever since. I don’t pretend to grasp the science as that’s not my skillset but I do know that when I’m struggling with joint pain and inflammation it tends to be when I’m under medicated for hypothyroidism and low vitamin D. I have had to enlist the support an endocrinologist to insist to my GP that my TSH level is sufficiently suppressed - normal range just isn’t my normal. Also they need to check full panel I’ve learnt - no good just testing TSH. I have learnt where my own range needs to be now but couldn’t apply this to others.
I have Scleroderma and Sjogren’s rather than MCTD - also my doctors suspect there may be others in my overlap but my immunology only shows high scleroderma antibody. Problem with overlap syndromes is that we never know which CTD is progressing. The swallowing and bowel issues could be scleroderma and the stiffness could be thyroid or Myositis - it’s really so hard to know but I would say your rheumatologist needs to look harder at the bigger picture and treat more aggressively than 200 Hydroxichloraquine. Then again with complex surgery coming up you don’t want to be immune-suppressed. I hope the surgery goes very well and you feel the benefit once you’ve fully recuperated.
Thank you so much for your reply. I did ask the GP to do a full TSH panel but they refused and said that is not what endocrinologist has wrote to us. I do think its my thyroid. So I will push for that. My B12 and D are fine as I have had suppliments. They are just above the minimum as is my iron.
Well there are companies like Blue Horizon and Monitor My Health (run by NHS) which are nhs approved for finger prick thyroid blood tests etc. I just got a Covid immune response one from MMH but due to postal strike and Raynaud’s combo it’s all gone badly awry🙄
Interestingly my GPs seem to have started doing full thyroid panel once a year now having always previously only run TSH. Hope you can get some answers and start feeling better soon.
I am horrified that in 2022 the medical profession are still not acknowledging how the thyroid can cause such complex health events - I was the same as you almost wheelchair bound and with Lupus and eventually got onto thyroid meds and my health improved - joint pain gone etc. etc. - as long as I keep my thyroid under control my Lupus is also keep under control - the itching you have could be your liver which is heavily compromised with low thyroid hormone you really must insist you need to be seen by someone who can help with the thyroid - either your rheumatologist or an endocrinologist. Have you seen this: I had 100 of these symptoms and all under control and the Lupus when I went on steroids and thyroid meds. Lupus patients have a 1 in 6 chance of also having an underactive thyroid.
In short, despite the varied presentation and effects of thyroid disease, the rheumatologist should seriously consider the implication of any manifestation of thyroid disease in any patient with lupus. (this paragraph came from this document)
Interesting ...talks about weight gain as well. I have put a shed load on over the last 12 months even though I have cut my meals to 2 per day, gone diary free etc... ill ask for a referral back to endcron
Hi.sorry to hear you are struggling so much.hydroxy takes up to 6 months to gain full effect.you could drop down to 200 or try 300 mgs a day by alternating doses. I also have hashimos are you under an endo for it or is it just your gp ? I take thyroid extract. B12 deficiency anaemia goes hand in hand with hashimos have your b12 levels been checked ? I had laser treatment for endometriosis in 99. Hashimos is autoimmune thyroid disease and b12 deficiency is also autoimmune.GPS are not much good when it comes to AI illnesses ....its too complex. If I was you I'd ring your consultants secretary and tell her you are struggling and request an appointment. Keep a symptoms diary and pics . Be kind to yourself and rest .Best wishes SML xxx
Thank you for your reply. I spoke to endrocologist on the phone and they sent me back to GP for regular blood tests and diagnosed me with hashimoto's. If I drop to 200mg will that stop the itching?
My b12 was very low i was on 3 months of taking that and its in the levels they have set as ok.
My vit D was low and that is now back up within normal levels.
When I told the rhumotolgist about swallowing she dismissed it saying it had nothing to do with AI. My fatigue she said is endometriosis not MCTD.
Im just lost at the moment. I dont know what to ask? Who to ask and who needs to listen to me. 😭
this is nonsense about the swallowing not being MCTD or the fatigue. I have had this since my mid 40’s and I’m now 69. My first symptoms were Raynauds, choking when eating, swallowing difficulties and awful fatigue. Other things came along including weight loss which resolved and migraines. I believe the debate amongst rheumatologists that MCTD is a condition that could develop into a definite autoimmune disease and is not that serious doesn’t help. It causes confusion amongst the profession. In fact they prefer to use UCTD (undifferentiated Connective Tissue Disease ) or overlap which is more serious. I didn’t see any doctor for a few years (apart from my GP who told me to wear gloves when I told her about the Raynauds). I kept away as I had young children and was frightened to be honest and some symptoms did resolve. But the fatigue and reflux never went away. Many years later it looks like I am developing Limited Systemic Sclerosis (Scleroderma) as I have major gut problems. But this is many years later and some people do get better. I wonder if a scleroderma centre like the Royal Free might be better for you? I have good care there. I have also been on Hydroxychloroquine for years. My old rheumatologist was reluctant as she kept saying my symptoms were mild but Professor Denton prescribed it later. Also I have recently developed bad itching which you get with Scleroderma I believe. The gut problems also throw up allergies so so difficult to know! Spaniel mad lady is right to advise googling MCTD.
I’m in North Staffordshire & attend Haywood Rheumatology Hospital, Burslem, Stoke-on-Trent which is excellent.
My husband has RA and after a few years of various meds/DMARDS/subcutaneous, self injecting Biological Therapy (Adalimumab), he now has IV infusions of the cancer drug Rituximab. He’s had/has excellent care & treatment, they monitor him rigorously.
I was only diagnosed with SLE Lupus in June 2022 but have been looked after extremely well thus far.
Whether or not your Primary Care Trust would refer you to a hospital outside your area, it may be worth asking. The Haywood is quite oversubscribed, I waited 9 months for my initial consultation
I don’t know the Lupus specialists in Manchester but I believe there is a good Scleroderma specialist there. The Scleroderma pages on this forum may mention Manchester specialists. Otherwise SRUK (Scleroderma and Raynauds UK) website or helpline.
To be honest I don’t think it matters whether you see a good lupus specialist or Scleroderma as it seems many of us have features of both. I wouldn’t go to my local rheumatologist as they only mention RA but that is a Surrey hospital. Some smaller hospitals are better but a city like Manchester must have specialists I would have thought in these diseases. As people have said just keep pushing and get to know as much as you can in the mean time. Not easy though I know when you are fatigued and the system is so clogged.
Incidentally one of my first symptoms was a swollen thyroid and before I even had heard of Raynauds or seen rheumatologist an ENT specialist sent me to an Endocrinologist. He suggested my choking was that and removing myThyroid. Unfortunately I went ahead. He also found the antibody and suggested it only meant I might develop Rheumatoid Arthritis one day! It made no difference. It was some years before I saw a rheumatologist. Things I should hope, have improved a lot since then.
They ALL need to listen to you .It is hard getting them to listen sometimes which is wrong.it took 5 years to get them to listen to me.hashimotos and b12 both cause fatigue. I don't know about the itching I've had no.problems with hydroxy at 400 mgs .I do get itchy patches from time to time but I'm also at that funny age.the dry eyes could by sjogrens which also causes dry mouth etc.b12 should be above 800.I always ask for copies of letters and bloods so I can check myself. you do have to be assertive with these people sometimes .you can always ask for a second opinion.
The normal range for vitamin B12 (total) is between 200 – 1100 ng/L (nanograms per liter), 200 – 1100 pg/mL (picograms per milliliter), or 148 – 811 pmol/L (picomoles per liter).19 Jan 2021labs.selfdecode.com › blog
Vitamin B12 (Cobalamin) Blood Test:
I think you are too low. If you need b12 supplements more often then not it is for life especially if you cant absorb it from food.if left untreated it can cause nerve damage so I'd be asking them if they are prepared to take responsibility for it. I have pernicious anaemia so need b12 injections every 8 weeks.quote the NICE guidelines for b12 if necessary.
Can't help regarding cholesterol sorry.
You need to shout to be heard ,keep going back if necessary, they are not above questioning or challenging so say if you are not happy.
I was 43 when I became ill so I understand where you are coming from.for 5 years they told me it was in my head so I kept going back and round them all until I got an understanding rheumy..there isn't always answers to some things...I get alot of inflammation my lungs but they don't really know why...all we do know is the only drug that keeps it under control is prednisone 🤷♀️.xxxxx
Google mctd and fatigue then go on rarediseases.org.there is some interesting info about fatigue and swallowing difficulties that you might find interesting .might be useful for challenge your drs. X
I had a terrible reaction to Hydroxychloroquine, (June - August 2022), including the symptoms you describe; it felt like I’d had acid poured over my scalp, face & body. The itching was off the scale; my body hated that med.
GP suggested antihistamines which didn’t help at all, Rheumatology told me to stop taking the Hydroxychloroquine immediately. I will never take it again - the dose was 400 & 200 on alternate days.
It really does not suit everyone, regardless of how long it takes to work. I’ve got enough problems without dealing with the awful side effects of a medication which gives me no benefit whatsoever.
Hope you soon get some relief….I did once I stopped taking Hydroxychloroquine 🙃
I stopped taking it 2 days ago. Still taking antihistamines buts thats exactly how I feel. Even my ears are itching feel like I am on fire. The antihistamines not sure they are working but I feel slightly more relief. Suppose the shower will be the ultimate test.
The phrase you use, “feel like I’m on fire” is exactly what I said to GP & Rheumatologist. I had no luck with Prednisolone either, only managed 12 days & had severe reactions/side effects & was instructed by Rheumatology to stop that immediately too - no tapering.
I take a fair amount of medication for various health problems but prefer to take nothing specifically for SLE Lupus as the side effects are far worse than the condition itself!
I have many of the symptoms you describe plus severe, constant itching & tightness on my scalp; Hot water on it is excruciating. I have skin lesions on scalp, face & hands too, plus very dry skin for which GP prescribed Dermol 500 lotion. This can be bought over the counter but I have a pre-payment prescription certificate as I don’t get free prescriptions. It definitely helps with dry skin which can become itchy, I even wash my hair with it & rub it into my scalp in a bid to get some relief. It doesn’t help but my hair is well conditioned & soft!
I’ve recently seen a Dermatologist & am awaiting appointment for biopsies. Maybe ask for a referral (if you’ve not already had one).
In fact the Dermatologist I saw disputed the Rheumatologist’s diagnosis of me having SLE Lupus! Heaven help us……
I’m 57 but feel 90 today as everything is flaring - can’t win!, cold weather triggers symptoms & hot weather/sun triggers symptoms - gets me down & trying to tell GP everything in 10 mins is impossible. Sometimes I write it all down in bullet points on a piece of paper which I hand to GP as I walk through the door saying, “It’ll save time if you read this .”
I take Feroglobin or Metatone for fatigue as I keep being told bloods are in range but some days I simply have no go in me at all.
It’s all so bewildering, frustrating & demoralising- keep going as best you can 🙃
Thank you I feel like I'm talking to people who understand on herem I actually thought I must be crazy as they keep doing full bloods and telling me everything is ok. My normal might not be the range they talk about so loads of advice on here has been great. Hope you feel better soon. X
try lukewarm showers not cold not hot but some where in-between because our skin has become sensitive to the heat and cold. Trust me I have been there. Make sure it is on the cooler side than hotter side.
As for me, Diagnosed in 2010 with SLE, I am dry all over , nose, eyes mouth and eyes, had my hysterectomy in 2015, for infected fibroids - surgeons were not aware until I was on the table, now awaiting to see what my spinal and hip MRI turns out.
I take 200/400mg hydroxycloroquine alternate days. Hydroxycloroquine takes time to build up in your body at least 6months before you can see the full effect.
try the anti histamine then moisturising your body even that use ones that is of good quality like Neutragena or Aveeno after bath/shower. try changing bar soaps not gel to ones with natural oils ,with no artificial additives. there is loads available out there .
Hope this helps, if you need any more advise feel free to ask. here.
Thank you. I'll try the bar soaps with natural oils. I have acne so my skin isn't actually dry and gets oily quickly. Its a wierd combination at the moment. The parts of my body that stay cold most of the time are very dry hands, feet, lower legs and arms. The rest are normal but the itchiness is everywhere. Yes the water is luke warm and then before I get out just turn to colder as I feel the itching starting so that helps sooth that Initial rush. I use oil whilst skin is still wet. 💜
dry your skin then apply to your body then it will soak into your body better.whilst you are rubbing it in make sure you rubit in well throughly as oil can leave residue on clothes
Hi Awwy. Sorry you are going through the maze of diagnosis. I have Lupus. But originally I was diagnosed with MCTD
Rather than tell you my health story from beginning, (it’s too long and pathetic lol); I
Will address 2 of your concerns. First, itching. Did you itch at all before taking hydroxy? I did. Started around menopause and can be a symptom of menopause which no one had told me. Hydroxy doesn’t make me itch but my dry skin does. It could be Hydroxy is causing itching. But has it helped any other symptoms? If not you could stop hydroxy and evaluate itching. I also only take one shower a week. Tap water and it’s minerals make me itch terribly. I swim in saltwater and it is soothing. I still moisturize after swimming
Swallowing issues according to my gastroenterologist are common with AI diseases. It’s really awful and sometimes scary, isn’t it? I’m actually going this next week for my 2nd EGD this year. My esophagus has become very narrow and my Dr. Must stretch it for me. It becomes so bad swallowing pills almost is impossible. Acid reflux too is another symptom. My eyes, throat, mouth are exceedingly dry and I’m expecting another AI diagnosis. A simple remedy for dry mouth and throat is sucking on ice cubes and lemon drop candy.
The lemon drops activate the salivary glands. I also have an electric massager which I use directly on the salivary glands under my jay and the ones by my ears. It causes them to open up and saliva flows. These are temporary fixes of relief. But temporary has become acceptable. Best to you!
Thank you. I didnt have any itching before I started taking hydroxychloroquine. After about 2 months on 200mg in noticed my skin was more sensitive to temperature. It was hit and miss with showering. Sometimes it was irritating but the oil would soothe it. When I went to 400mg after about 6 weeks it was like woah 😵 something isn't right. Now its unbearable.
I've been in a medical menopause for over 2 years and my skin has been fine other than breakouts of acne.
Swallowing I have had the barium swallow but they want to do more. Pills are awful to try and get down. Im not sure I have acid reflux but I know I can feel my food going down and it gets stuck. My throat is dry but my mouth isn't. Feels like when you have the start of a sore throat. Liquids if im.not concentrating and salvia often go down the wrong way and I end up choking.
I a former Dental Nurse, (qualified), so I’m going to suggest that any sweets you have to suck are sugar free. Assuming you still have some or all of your own teeth, the worst thing you can do to induce decay is suck sweets with sugar in them; You will be constantly bathing your teeth & mouth with a sugary solution, also holding the sweet in one spot will quickly lead to erosion/plaque/decay in that area of your mouth which is the last thing you need on top of everything else. The alternative if you suck sugared sweets is the brush your teeth after every one or have the lot in one go, then thoroughly brush your teeth. 😬
🤣😂 I have all my own teeth. That's not next to go is it? 😬. Im not really a fan of sweets to be honest so will make sure I get sugar free ones. Thank you 😊
Not liking sweets is probably one reason why you still have all your 🦷, lol, so well done you!
In training, 40+ years ago we were told, “Your teeth should last you a lifetime as long a as you look after them.” Barring accident or injury of course.
Good oral hygiene & regular dental check ups will stand you in good stead. Unfortunately, despite all that I have Oral Lichen Planus - yet another one of those weird & wonderful Autoimmune Immune Diseases plus annoying mouth ulcers which are part of Lupus.
I noticed you’re awaiting a hysterectomy, I had a Total Abdominal Hysterectomy for a uterine Sarcoma & Endometrial Stromal Cell Sarcoma in 2007 when I was 41. I also have bladder & bowel problems & have recently gone through loads of tests/procedures to identify the cause of the bowel issues….turns out it was damaged as a result of the hysterectomy all those years ago ….. I’ve been back to Gynae-oncology & GP time & time again over the years, eventually it’s take a Colorectal Surgeon to listen to me…..BIG sigh.
Form teeth to bowels, female parts & bladder, blimey what a conversation! 😂
If you Google Rheumatoligists Dr Donald Thomas and Dr Arvind Kaul you will find good videos on the importance of taking hydroxycholoquine.
I got a bad rash on 200mg per day but rechallenge overseen by my rheumatologist worked no rash when tried second time. It took six months to start to notice the effects - lots of my symptoms went.
Important to be open with rheumatologist. Different brands available. My rheumatologist specified Zentiva - which brand are you taking at the moment
If hydroxychloroquine had caused rash again in rechallenge then rheumatologist said would lower dose of HCQ and make up by pairing with second antimalarial Mepacrine.
Hope this helps. My symptoms this year are much better than last year, I feel hydroxychloroquine changed things around for me, and despite the rash initially my body coped in the end. I think a combination of factors contributed. I had got soaking wet due to heavy rain the day the rash started.
The information you have supplied is very interesting and I may well learn something from from it.
Unfortunately for me I could not tolerate Hydroxychloroquine at all, despite the opinions of the Rheumatologists you mention. Whilst I respect their professional knowledge & expertise, no amount of evidence for it will convince me; I definitely will not take it ever again regardless of the make/brand. I know my own body better than any doctor.
I was advised by my own Consultant Rheumatologist to stop taking it immediately & that I would not be prescribed it again as it clearly gave me such an adverse reaction and made me incredibly unwell.
I was closely monitored by my Rheumatology team because I had previously suffered an Anaphylaxis following a Depo-medrone Steroid injection whilst at the Rheumatology Hospital & have a history of intolerance and allergy to various medications.
We are not all the same & everybody’s body is different and may not respond to a particular treatment just because someone else’s has.
So sorry. Sounds dreadful. Can you afford to go private? Research to find the best rheumy in your area. Most cannot, I know. The first apptment is usually £250 but it is the tests the ask for that cost tons. Just thought I'd suggest as at least if you get a better diagnosis from all your tests so far and assessing you for longer than the 10mins one gets from the poor on it's knees NHS, you might be able to take that back to Rheumatology or to your GP and get some better diagnostics!
BTW I was horrible allergic to HydroxyQ ( diahrea from hell all day and severe migraines that left me whimpering in pain more and more as the time on it went on). I was then put on methotrexate - this helped. a lot. They need to review you urgently. Oh and antihistamine will really worsen dry eye etc. Have they tested you for Sjogrens (see the site on here too - SRUK) as this is all about severe dehydration - ie skin, guts, eyes, mouth, lady parts). Also you are mentioning things such as related to Scleroderma - linked to Sjogrens. Do read up on the SRUK website or just anywhere on the websites of merit. You need to be informed. Are you drinking 3 litres of water a day? If not, this will help enormously. So a large glass of water every hour and just graze on it as and when. I cannot live without that. See what you think after a week.
I cant afford private. Im a single mum working full time. My employer has been very supportive and I work from home with flexibility. ( i have worked there for 21 years) I am going to try with GP again, Rhumotolgist and get referral to endrocologist.
My dry throat and swallowing started 4 months ago and are progressively getting worse. I am waiting more tests from gastroenterology who have seen me pretty quickly to be honest.
Water... I drink as much as I can. I have endometriosis of the bladder so have cut down because it triggers my pain and bleeding.
I used to drink 2 litres a day just can't manage that now. ☹
Sorry to hear of your experiences . Ever grateful for the advice.
By the way, I had endo quite badly in my late 30's and it is linked to lupus, sjogrens (I have both although was undiagnosed at that time) etc. The pain is unimaginable, I know, so sorry. Have to say the laparoscopy really helped and then I went into perimeno anyway after which things stopped happening, of course, although yours sounds quite severe. Here is some research on it, if interested:
Hi Awwy Sorry to hear you are in so much discomfort and stress. 2 years ago my wife could not swallow -- it was only when she was given an endoscopy that the medics found she had developed thrush all the way down her oesophagus. She was later diagnosed with Lupus SLE when her dsDNA antibodies were found to be over 1000. She was prescribed hydroxy at 200/400 alternate days. I discovered here that you can get a 300mg tablet made by Black Rock Pharma but neither the rheumy nor the specialist nurses were aware of it -- they even argued with me that it did not exist. They do not know everything!! After 12 months of asking she is now on 300mg Black Rock per day -- so we did win in the end and she has had no reactions/side effects whatsoever.
It is very true that it takes 6 months or more before hydroxy starts to show any improvement so be prepared to see it through.
I have also heard on this forum that some people react badly to some of the various fillers used by the different manufacturers - not to the hydroxy itself. It could well be worth a try to ask to go on a lesser dose (than 400mg) and move to another manufacturer.
Re your sore throat -- have you tried honey and lemon ? Honey is anti bacterial and anti fungal. I guess the old remedies may be worth a try. You may have guessed -- I am a beekeeper and have sold lots of honey to local pharmacists over the years.
Thank you for you advice. Yes I have honey in warm water. I think I need to ring the secretary tomorrow and speak to my consultant about hydroxychloroquine. Whether I try another brand or continue on this one at a lower dose 🤷🏽♀️ should have been given better advice from the nurses really.
Hope your wife is better now. That sounds painful. Bless her. 💜
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Can’t cope with the heat 😡
MCTD help please...
What do your flares feel like?
Just diagnosed Lupus today 
