Rheumatologist official diagnosis is diffuse connective tissue disease

[clhclh]

I have posted a few things here in the past. Rheumatologist has consistently insisted that I don’t have PMR because I did not have elevated CRP/ESR and I’m too young. I got a lot of relief from prednisone, but prednisone also has effects on lots of other things (according to neurologist) in the end, the rheumatologist decided that I should start taking methotrexate as a steroid sparer. I don’t believe it ever really worked for me. I decided to come off of prednisone because I also have a neuromuscular condition and had quite a bit of disease progression after taking prednisone. I’ve also stopped taking the methotrexate since it didn’t really work anyway. I have pretty bad shoulder pain - maybe not quite as serious as it was initially 2 1/2 years ago but I’ve decided that I need to just live with the pain in order to spare my muscles. I’m stuck between two specialists - one specialist says the pain is from the neurological condition and the other specialist says the neurological condition doesn’t cause pain. I need to protect my muscle strength as much as possible to remain independent. Fun huh?

[PMRpro Ambassador]

Especially when the doctor's premise that it isn't PMR is based on at least 2 false statements: up to 1 in 5 patients with PMR and GCA have bloods markers that are in normal range and that you were too young at 58, the classification criteria have always said over 50 but that is when choosing patients for research studies and doesn;t mean you can't develop it before 50.

All I can say is that I have been on pred for 16 years and it gave me my life back. Yes, it can have some problems associated with it but not everyone suffers them, many have few or no problems - but the vast majority of us are grateful for what it has done for us.

You don't tell us where you are - I assume since you say prednisone you are probably in the USA? Might they let you try Actemra or Kevzara?

[clhclh in reply to PMRpro]

I am in Canada. I am doing what I can with kinesiology and physio and trying to make the best of it. I need my specialists but right now they don’t agree and get frustrated with me when I argue back and try to tell them that I’ve read other things (here). I’m 60 now so if it’s PMR, then I actually ‘qualify’. I really need to preserve my muscle, and that is a known side effect of prednisone, which I simply can’t risk anymore… thank you for taking the time to reply.

[PMRpro Ambassador in reply to clhclh]

But the inactivity that constant symptoms inflicts is also bad for muscle. You don't always lose muscle and it is possible to maintain it - as this guy's story shows

healthunlocked.com/pmrgcauk...

[Gala123]

Sounds like to have quite a complex health situation where treatment for one thing can seriously jeopardise your health in other ways and affect your quality of life negatively in the long-term. I hope your doctors find the right balance for you. It is not good they get annoyed when you try to challenge them. It is important to know your medical team are on your side. Keep looking for such people. They are out there x

[Blearyeyed]

I have Ehlers Danlos Syndrome , another genetic connective tissue condition , so I understand your situation as the balance between treating one condition which is made significantly worse with steroids use but needing to treat another problem that can only be improved with steroids was like walking a tight rope.I had GCA , the steroids were essential to save my eyesight and treat the inflammation but steroids did make my EDS worse and increased my neurological symptoms too. I ended up having a few years of drastic yo-yoing on steroids as they treated the GCA but wanted me to reduce steroids to the lowest dose I could cope on and to get off them as quickly as the GCA would allow.

My dislocations and subluxations increased a lot while on steroids and I've not been able to regain the muscle I have lost so that increase has remained.

If I get another condition requiring steroids I don't know what I will do , as I don't really think that my body can cope with a new course of high dose steroids even though I know the pain I would experience will affect my quality of life even more than the pain I suffer with now does.

As you say , there's little point in taking steroids to improve inflammatory pain and your quality of life if you end up having so many injuries and tissue damage issues that you are still left immobilised by the cure. You still can't repair the muscle in either situations, it makes for a difficult life and it's hard to keep positive , although important to to do so.

As someone whom has various neurological conditions I'd agree with the specialist whom says that the pain is caused . at least in part, by your neurological conditions, the most common symptom of many nerve issues is intense pain. Whether you have PMR or not , the pain from a neurological condition will make it worse , so both the nerve pain and inflammatory pain needs to be treated to get the most relief.

Pain is a constant and unwanted companion if you have any form of connective tissue disease. Stiffness is another, as despite CTDs causing less elasticity and over flexible joints , that instability means that you spend much if your time trying to remain rigid to prevent injuries. Plus , you get stuck with all of the other neurological, digestive and gynaecological issues as well because we need connective tissue everywhere and the impaired tissue causes most parts of the body to suffer one syndrome after another.

Are you receiving any treatment for the neurological pain , which at the least , would make the symptoms more bearable whilst you are having to cope steroid free?

As you say the physio and joint support is vital with a connective tissue condition , but you also need to pace your physical activity and have some pharmaceutical help to control the nerve pain whilst you exercise.

It's hard because most physios have no real experience of choosing the appropriate methods of physical exercise to help improve connective tissue disorder symptoms and often over exercise the areas which can lead to more inflammation in the joints.

I found hydrotherapy the most useful way to exercise with less pain , although sadly , they shut our only Hydrotherapy suite during COVID so I miss it , even though I can still exercise in a warm pool.

Take care and listen to your body , I feel for you , Bee

[clhclh in reply to Blearyeyed]

Thank you for your detailed and thorough reply. It’s much appreciated and I think you really understand the tight rope aspect. My neuro condition is muscular. It’s a type of muscular dystrophy where it’s a dominant gain of function disease and there is a toxic protein that is attacking the muscles and destroying the cells. Once the muscle cells are gone, they’re gone though not all cells are affected at the same time in the same area and there’s lots that can be done with exercise like resistance training and a protein rich diet to keep the good muscle cells healthy. I see a Neuro Physio, who knows a lot about muscular dystrophy and the kinesiologist is somebody that she works with so currently I’m being well looked after to the best of everyone’s ability.

The rheumatologist is going to send me back for ultrasound of the joints if the pain gets unbearable as the methotrexate leaves my system, though I don’t think it was doing anything to begin with. The morning stiffness and pain is the hardest to deal with psychologically. I’m hoping that trying to train the areas and get some stability will help with that. Reformer Pilates is my go to as the muscle is working without dealing with the constant challenge of gravity, which is not my friend.

EDS is a bear and I’m sorry you also had to deal with GCA at the same time. Very scary to have your eyesight threatened.

Stay well!

Ch

[Blearyeyed in reply to clhclh]

It might be worth asking the rheumatologist if it's possible to trial using a medication called Leflunomide after the MTX is out of your system, as long as it's suitable for use with your CTD and other medications, it is another Steroud free alternative which can give partial relief and some people have had better pain relief with less side effects on Leflunomide to MTX for various inflammatory conditions.It's a DMARD more commonly used for Rheumatoid and Severe Inflammatory Arthritis.

Like with MTX , you benefit from taking Folate and actually increasing other B vitamins when you take it.

Although , I finally discovered that taking sublingual B12 and Methylated folate were also sensible preventatives for both inflammatory and neurological pain in the muscles with most health conditions because of how Deficiency and Insufficiency in these increases muscle wastage , weakness and general neuropathy.

I was eventually diagnosed as being B12 and Folate Deficienct, and the cause was Functional ( not just caused by the stomach and likely linked to the effect of EDS on my pancreas as well) but when I finally pushed for checks I could hardly walk. Since starting B 12 injections and Folate infusions I got my mobility back and began building muscle again. I was also finally able to reverse the recurring Anaemia and Vitamin D deficiency ( which also adds to muscle weakness and pain ) after years of failed treatment.

I have found that both my inflammatory and neurological pain has improved with increased B vitamin therapy , plus it has improved my exercise tolerance.

You may find trying low dose therapy for neurological pain will add least take the edge of the inflammatory pain you are suffering , but again it depends on what you can take with your condition and current meds. I have a lowest dose combination of Paracetamol, Pregabalin and Duloxetine for that ( EDS also gifted me Fibromyalgia, Peripheral Neuropathy and RLS). It's not a cure but it certainly helps to manage the nerve pain alongside pacing my activity to improve my QOL and mobility.

If you can't take Leflunomide or find no response to it , you could also ask about Biologics. But again , there may be other reasons from having muscular dystrophy that could mean that isn't an option , or you may find it's not working for you.

Sadly , I tried a Biologic recently for my Migraines but I have Chronic Dysautonomia and POTs and found it increased my cardiac symptoms so it had to be stopped.

Basically, you seem to have got the right route for exercise , I'd just suggest that you might want to break up your sessions into smaller intervals during the day (10-15 minutes a time rather than 30-60 minutes) as you will want to reduce the chance of DOMS flaring up the PMR or inflammatory condition.

Little and often seems to strike the balance between maintaining muscle and reducing the flares of inflammation and nerve related pain.

Training needs moderation otherwise it can be a double edges sword.

I found water based resistance therapy was invaluable for exercising the muscles more and building mass without putting as much stress on the joint. I also do a routine of gentle stretches before I get out of bed in the morning and warm the joints with a heat pack before I get out of bed which seems to help my mobility first thing in the morning. I don't do my resistance exercises generally until after lunch.

Walking with my Nordic sticks has helped my gait and posture but also helps with breathing , stability and exercise tolerance. I got them initially to reduce my EDS and Dysautonomia related dizziness and falls. Like you , gravity is not my friend.

Hope things improve for you , please feel free to private message me if you ever want a chat , take care , Bee

[PMRpro Ambassador in reply to Blearyeyed]

"it is another Statin free alternative" - steroid-free surely?

[Blearyeyed in reply to PMRpro]

Blooming autocorrect , honestly it can go to hello! 😆😆😆Thanks for spotting that , just changing it now

[clhclh in reply to Blearyeyed]

Thanks for all the info. Sounds like you have many health things to deal with! I am going see how I feel over the next couple months before I start taking more meds. It’s nice to have much less pill popping to remember!