MCTD and Fatigue and sleep

[Awwy]

Hi

I'm never sure which group to post these in because I have overlap autoimmune so if there is a group more suitable to this lost please let me know.

I've really been struggling since August last year when I started a flare. I'm currently on the maximum dose of methotextrate and will now be starting sulfasalazine in addition to this.

I've had 2 rounds of steriods, and last Thursday was given a steriod injection.

My current symptoms

My hands and legs are swollen. Mainly knee and below. They are always cold no matter how much I cover up. They are very stiff. If you tried to touch my arms or legs it makes me wince in pain. Extremely painful. Even clothing is difficult to put on sometimes because it hurts my skin. I've tried compression but it starts to dig in as my swelling progresses throughout the day.

Pain in my neck and shoulders can be unbearable at times.

I am so tired...getting up and out of bed is really difficult. Mornings are awful and then trying to function throughout day is becoming extremely difficult. I can shower then struggle to dry and dress because I'm tired. I can push myself to cook but then not move for the rest of the day. I think I'm just about holding the little energy I have to keep working although I've had to reduce my hours and agree on reasonable adjustments.

My sleep is really difficult. It takes me time to sleep but I'm only getting 4 to 5 hours and I have sleep apnea.

My rhuematologist has discussed shifting me to biological treatment but in the UK you have to fail on 2 or 3 DMARDs first.

I couldn't tolerate hydroxychloroquine.

I have a cpap machine.

I take extra supplements tumeric, curcumin, vit D, B complex etc...

Anti inflammation diet

Done sleep hygiene

What else can I do? Does this get better as my previous flares haven't been like this.

Thanks

[PMRpro]

Personally I'd push the fatigue to the doctor - I only lasted a month on MTX because the fatigue started the first week for a day, but the 4th week I felt human for half the day before the next dose was due. It was the only adverse effect I had beside hair loss in chunks, no nausea or anything, But I could NOT function so it wasn't an option for me and it took 3 weeks before I felt back to anything like I had been previously. I'd say you've failed MTX ...

[Star13]

Have they checked your thyroid and by that I mean not just a TSH but a full Thyroid screen with FT3 and FT4 and thyroid antibodies? Have they checked your B12? Before both tests you should stop your BComplex for a week as it will contain Biotin and that will upset blood test results.

What are Folate and Ferritin results too? Very important with fatigue that all the above are checked and Vit D at least 100, is yours?

If you can’t get your Dr to do these tests you can get them done privately with someone like Medichecks or Blue Horizon and they even arrange a nurse to come to your home if you can’t do it yourself. Make sure the test is done around 9.0am in morning before any other meds and food just water, especially the thyroid test.

[Awwy in reply to Star13]

Hi yes I've been with my endocrologist for 2 years. I have been diagnosed with Hashimitos disease. I have antibodies but all my thyroid including FT3 and 4. Free FT have been normal. Only a few tests have been elevated but corrected themselves. I've only just started taking the B vitamins. My D is above 50 but not 100. I had a hysterectomy in April last year and since then my iron and ferritin levels have been on point too.

[Star13 in reply to Awwy]

There is normal and normal! Just because they are in the normal range does not mean they are normal for you! If you are not converting t4 into T3 properly then this can be a cause of a lot of symptoms.

I’d strongly suggest that you post your symptoms along with your blood test results over on the HU Thyroid UK site as there are some very clever people on there who can break down what’s going on. The majority of Endos are not trained in thyroid but in Diabetes so unless you have been extremely lucky I doubt very much if they have gotten to the bottom of your thyroid issues and your symptoms sound very much to me as if that’s what’s at the bottom of what’s going on.

[Awwy in reply to Star13]

Thank you I will do I've tried having this conversation with my endocrologist and because I don't understand it enough he made me out to be dumb. And it was irrelevant. I'll look back at my results and post on there. Thank you.

[Olive12345 in reply to Awwy]

Do you know what your ferritin levels are? My rheumatologist keeps telling me mine are fine and wont cause symptoms because the nhs only considers under 15 deficient. According to the nice guidelines under 30 is deficient. Mine was 28 and I've been diagnosed with fibromyalgia three times but prescription strength iron supplements seem to have fixed it. Might be worth looking into!

[Tiggywoos in reply to Star13]

Thank you for posting this as I need to check my thyroid and I couldn’t remember who to use xx

[Lizzo32]

Documented side effects of Methotrexate that we all need to know about from the NHS website:

nhs.uk/medicines/methotrexa...

[Olive12345]

It could be worth trying hydroxy again? My friend couldn't tolerate it the first time she tried it but for some reason was fine the second time. Might have been a different brand as people often react to the added ingredients. Or it might just have been an immune overreaction the first time and then the immune system was less surprised by it the next time. In MCAS, the advice is always to titrate up so you start with a super low dose like quarter of a tablet and then increase after three days so if your immune system is super over reactive it could be worth trying that.

Is there nothing to treat the swelling? You’d think there would be something that could treat the symptom before the immune meds kick in?

I think people with lupus are told to avoid turmeric supplements and cucermin probably too. Might be worth looking into that? Recently I've found that a choline supplement really stabilised my lupus flares a lot more. Choline is found in eggs and I started taking it for another reason but my flares suddenly had gaps between them and my ANA went negative which is mad because its been up for years and years. It might be worth thinking about if there could be any deficiencies in other nutrients and amino acids?

Hope you find the answer soon, it sounds like a rough time x

[Awwy in reply to Olive12345]

Hi.

Thank you for your advice. I've tried hydroxy twice and could not tolerate it. Methotextrate I've had it tapered up slowly and sulfasalazine is being added and tapered up.

My ferritin is 64. Was 80 couple of months ago. The tumeric and curcumin has helped bring my swelling down. Doctors just telling me to take naproxen which I can't take because of side effects.

Other than being on steriods or steriod injections nothing has helped it so far.

It's just a battle.

[Awwy]

This is it at its worst just spending a day on my feet. I was advised to wear compression which is very painful.

Picture of swelling on leg as example

[Numptybrain]

I have been on MMF and failed currently still on prednisone and I’m awaiting ritimulab infusions so I’ve only been on one DMARD .I have serositis caused by seronegative RA sjogrens and another connective tissue disorder but it’s attacking my lungs and pericardial of the heart. I’m not sure if I spelt the infusion correctly but new rheumatologist reckoned the MMF wasn’t suitable anyway and I needed a stronger form of medication.

Take care

Wendy xx

[Awwy in reply to Numptybrain]

So sorry to hear about your struggles. Hope you can find something that works for you.

[Numptybrain in reply to Awwy]

Thank you, hopefully the infusions will help. Crossing fingers and toes anyway.

Take care

Wendy xx

[Addamcm]

hiya from a fellow MCTD sufferer. Do you have secondary fibromyalgia? I have, my fatigue is linked mainly to that! I also have swelling, I suspect I have lipodemia, seeing consultant this week so will ask.

What helps me is magnesium, I take that to improve my sleep. Lions mane, I take in the morning as well a collagen supplement. I have found that I still get flare ups but not as bad.

I also do stretches am & pm no matter how sore I am.

Hope you feel you have it under control soon.

[Awwy in reply to Addamcm]

Possibly have fibromyalgia. I've suspected lipodemia but rhuematologist not ready to explore that yet. Neither is GP both focusing on inflammation.

I take magnesium and I do resistance bands to keep me going otherwise I get too stiff to move.