Muscle wasting hands and feet, please help!

[Patricia2015]

Dear fellow lupies(alike),

Like you know I have since 2 years a diagnosis of UCTD (undifferentiated connective tissue disease). My rheumatologist prescribed Plaquenil 200mg per day. Some of my symptoms are reduced, but for over a year I have increasingly suffered from muscle weakness, muscle atrophy and muscle pain. My rheumatologist has referred me to a neurologist. They found no neurological abnormalities based on physical examination, a needle EMG of my legs and a nerve conduction study on my wrists and my ankles. Instead they said I was depressed (indeed that causes muscle atrophy) and should go back to the rheumatologist. Also a second opinion from a second rheumatologist returned no results except some abnormal blood results (ANA: positive since 4-5 years, IgM: 0.33g / l (reference value 0.4-2.3), B1: 217nmol / l (ref. value 80-160), Folic Acid: 42nmol / l (reference value 7-40) and vitamin B12. 1340pmol / l (reference value 160-700). In my urine over the past three years they found 2 times dysmorphic eryctrocyten (blood originating from the kidneys).

My proteine levels in my blood are excellent. I don't eat meat or milk that is why I take B12 supplements (orally) and a multivitamine), I eat fish once a week.

The muscle problems started in my thighs and hips so I cannot walk longer than 15 minutes (bought a wheelchair to be able to go to a zoo or museum). A few months ago, the problems started at my feet, I got high arches and starting claw toes. Moreover, I can easily make a so-called "pes equinus" (ie, stretch my legs and put my foot in the extension of my leg). I got new sole orthotics but this has hardly solved the problems. The last few weeks I got problems with my hands. The intrinsic hand muscles waste away. This also applies to the muscle between the wrist and the mouse of my thumb.  See the attached picture of my left hand. Right hand is actually worse :-(.

These problems, together with the earlier problems I had already because UCTD limit my life seriously. I think that I have more than just UCTD, I suspect myself that I have SLE. Because I am afraid that now damage which is irreversible, I'm looking for a good rheumatologist who would like to start treatment, even though there are encountered no anti-dsDNA antibodies in my blood with the exception of positive ANA. I live in the Netherlands and am particularly looking for a specialist in Belgium, because of previous good experiences with specialists there. Should anyone want to recommend a specialist in the Netherlands or Germany I'm obviously open to that too. 

Would like to hear if others have these kind of muscle problems too and what to do now?

[Helplupus]

Sorry to hear bout your flare ups, I have been battling Lupus this month 24 years the only serious problyi have had is a blood clot in my lungs back in 1998 from there just swollen hands, ankles and rash either on my face or leg. As for meds predisone when I have a flare up take a seven day pack and if I'm hurting really bad and I do mean bad I'll go to the hospital to get a shot. I pray everybody to see I have made it another day. I don't eat meat or any animal products, yes fish every now and then. I do a lot of natural food, straight veggies and fruit. I have a B12 vegan spray. I went to see a new doctor because I moved from my birth place and he said you have Lupus, of course I said yesir. He said you look very good, I said just a little fat, but that's a good then. My weight goes up and down. I love to walk and exercise, I find it relaxes my joints. Dance, yoga, piyo, mediation. Only time my flares up when the weather changes. Praying for my Lupus warrior. USA 

[Patricia2015 in reply to Helplupus]

Thank you Helplupus!

You also have a lot going on because of this dreadful disease. I am also praying for you.

Nice to also hear from someone who also mainly eats plantbased.  Besides fruit and veggies I also love eating beans, chickpeas and lentils in all kind of dishes.

I was underweight for very long due to my pancreas and small intestine problems but recently I gained back 10 kilos and now I'm happy with my weight but really need to exercise. Because of my problems with my legs I cannot walk or dance. I would need to swim but my UCTD made my skin really ugly so I rather not go.

[Helplupus in reply to Patricia2015]

Yes I also eat them as well, made a black bean veggie burgers and it was good. Make sure you watch your weight now, I to have problems with my legs bit it seems that the more to move them the better just when I sit or lay down the hurt. You can get a whole bodysuit to swim in, as far as your skin you say is ugly its beautiful from here because you are still here. Grab you a swim bodysuit and catch some waves. You will be fine that's your exercise. I'll be praying for you as well 

[Patricia2015 in reply to Helplupus]

Dear Helplupus,

I just noticed your reply. Thank you for your kind message. Really helps me.

Xxx

[Helplupus in reply to Patricia2015]

No problem

[Polly2Cats]

Gosh Patricia! Really feel for you. Wonder if it's worth contacting lupus uk direct and asking if they can suggest a good rheumatologist in your area (no disrespect to your guy/gal) 

[Patricia2015 in reply to Polly2Cats]

Thanks Polly2Cats but I live in The Netherlands.

[Polly2Cats in reply to Patricia2015]

Sorry I hadn't spotted you are in the lovely Nertherlands. It's a long shot but I wonder if you can research any national lupus conferences and identify speakers - there may be a rheumatologist. Be a bit cheeky and contact them on Twitter and ask for a recommendation. Very best of luck. 

[Purpletop]

It must have been a serious depression to cause that muscle atrophy - I'm mystified how doctors are so keen to blame so many physical symptoms on depression or even anxiety. Without much evidence.

You don't mention whether you're taking any statins, or any other medication that could cause muscle atrophy. I assume you've looked into that already?

I'm not sure that muscle atrophy could be a symptom of lupus, is that what makes you think it's lupus? Mostly there is muscle pain, as opposed to atrophy, sometimes weakness too, with lupus.

You'll find that the majority of the members here are UK based but hopefully someone from Belgium will be able to help. If at any point you're considering the UK for further investigations, let us know and we can suggest some consultants names.

I, for example, have all the blood tests negative for lupus but I have positive ANA. I got diagnosed on that basis plus symptoms and treatment was started immediately after diagnosis. I'm not only on Plaquenil but also on low dose steroids and CellCept (mycophenolate mofetil), an immunosuppressant.

I hope you find some answers and proper treatment soon.

[Patricia2015 in reply to Purpletop]

Hahaha Purpletop you are absolutely right. This must be quite a depression. 

About medicines I take Entocort in a very small dose (3mg a day) for two years now for chronic ilieitis. Entocort = Budesonide is a cortecosteroide but all doctors I consulted about this say that 90% of this medicine goes directly to the ileum and only 10% is systemic. Meaning I only get 0,3mg a day in my body. As I never experienced any side effects as moon face f.e. I also belief that doesn't cause atrophy.

Btw Plaquenil can also cause muscle problems and I asked my immunologist if I can stop with it. She said that she wouldn't advice me that and it stays in your blood for 6 months anyway.

I got 5 of the 11 criteria for lupus, my ANA is highly positive in every bloodsample since 4-5 years, but the required anti-dsDNA is negative.

I recognize the muscle problems with lupus: lupus.org/answers/entry/joi... 

You are very lucky and I am happy for you that your doctor gives you the right treatment despite your anti-dsDNA is negative. 

[linda96]

Hi, I was originally put on 200mgs of Plaquenil a day, but at a specialist lupus clinic they doubled that dose to 400mgs as they said 200mgs a day is the child's dose

[Patricia2015 in reply to linda96]

Thanks Linda96.

Interesting. I will look up that.

[Fennella02 in reply to Patricia2015]

I'm the opposite.  I was on 400mgs and complaining of muscle weakness.  The Prof of Rheumatology that I was seeing felt this was too much for my weight especially considering I had been on it for a few years.  She halved the dose.

I have UCTD/SLE and am treated as though I have lupus.  I think you are right to look for causes for your weakness and atrophy - they seem rather severe for Lupus.

There is an enormous world of overlap with UCTD - I'm not sure that there are many boundaries to what it can do.  I hope you get some answers very soon xx

[misty14]

Hi Patricia

Sorry to read of your many health problems. I too have been diagnosed with UCTD and it does have to be monitored for new symptoms developing. Can't help you with a Belguim Rheumy as I'm in the UK but I'm wondering whether a Physio appt might help with your muscle problems. They can recommend specific exercises that might help the atrophy. Just a thought. I hope you get some help soon. X

[Patricia2015 in reply to misty14]

Thanks Misty14.

I already visit a physio once a week for two months now. He mainly massages the stiff spastic muscles in my foot soles because walking is sometimes a true agony. Massage helps for a while.

[Patricia2015]

The problems are not only in my muscles. My tendons in my legs and arm also tighten despite using them.

My current immunologist and rheumy (I say current because I'm looking asap for a better one) only look at my joints. The argue if they are not swollen there is nothing to worry about. They don't look at my muscle and tendon problems at all.

[Hidden]

As always,  Rheumatology being "hit or miss"!!  Not good enough, quite frankly..I also have atrophy.  It's always the patients who notice the problem when Rheumatology is oblivious...(except some bright ones which are far too few)..  As for diet, I do eat quality animal protein.  I was once on veggie based diet (more than once) and I looked gaunt and lost too much weight.  If you are losing too much weight, it is likely that you are also losing your muscle mass which is generally to be avoided.  Someone who has SLE may well need high quality animal protein which is easy to absorb into our system. I never eat beans as my digestive system refuses to take it.  (It only goes past thru my gut).   Just be careful when you are on veggie only diet.  Humans are meant to eat variety of food stuff, fruits, bit of animal protein, fish, veggies etc.  Your body knows what you are up to.  If it doesn't like something, it shows loud and clear lol

[Patricia2015 in reply to Hidden]

Thank you for your response coniston11.

Actually I lost about 22 kilos (76 to 54 kilo) in a short period when I did eat a lot of animal protein. But despite that I kept loosing weight and was once 54 kilo by a height of 1.75 mt.

My GP then sent me to a dietician who subscribed me Nutridrink daily. After a year I regained 6 kilos. 

In that year I decided I don't want to eat meat anymore and due to all the plantbased protein I gained another 4 kilos. 

My total protein and albumine was just tested in my blood. They never have been so high and they reached the maximum of the range.

My plantbased diet consist not only of veggies and fruit but lentils, beans, chickpeas, mushrooms, nuts, soja, all combined with rice, potatoes or pasta and if I wasn't gluten intolerant also seitan.

It seems exactly this diet made my blood protein levels reachtl their ultimate high

[Hidden in reply to Patricia2015]

Soya is pro inflammatory. 

[Patricia2015 in reply to Hidden]

True

[Paul_Howard Partner LUPUS UK]

Hi Patricia2015,

If you are looking for recommendations of lupus specialists in Belgium you may wish to contact either; Association Lupus Erythémateux (lupus.be/) or Liga Voor Chronische Inflamitoire Bindweefselziekten (cibliga.be/) 

For the Netherlands you can contact; Nationale Vereniging LE Patienten (National Association for LUPUS, APS, Scleroderma and MCTD) (nvle.org/) or Lupus Patiënten Groep (Lupus Netherlands) (lupusnederland.nl/)

If you would like more information about lupus and how it is diagnosed, we have a free information pack which you can download from our website at lupusuk.org.uk/request-info...

[Patricia2015 in reply to Paul_Howard]

Thank you so much for these very useful links!

I contacted lupus.be and cibliga.be 

At lupus.be they only speak French and they redirected me to cibliga.be. 

Now waiting for an answer from cibliga.be.

[Paul_Howard Partner LUPUS UK in reply to Patricia2015]

I hope they are able to help with your enquiry.

[Lgrimm]

Hello, did you ever find out what was causing the muscle loss in your hands and feet. I am going thru the same thing right now. It’s very visible in my hands.

[Patricia2015 in reply to Lgrimm]

Muscle wasting has gotten a lot worse. Can only wear orthopedic shoes and wear hand braces. Have wheelchair for longer distances. Am constantly in pain. Recent blood results shown antibodies overlap myositis/scleroderma and six other antibodies all related to SLE. Unfortunately they stick to UCTD diagnosis because normal blood work is fine.