I have never heard of myositis, thanks to another member for mentioning this condition.
Has anyone else suffered with the long term illnesses which i have listed at the bottom.
I was diagnosed with psoriasis in 1982 while still serving in the military, then in 1987 was diagnosed with psoriatic arthritis.
By 1993 I had left the military and was diagnosed by a German Doctor I was negative for the HLA B27 blood test but after examination and seeing my psoriasis and rotten finger nails he also diagnosed the PA.
I have had so many problems over the years mainly neck, thoracic spine and lower back, I have had a lot of discomfort where the ribs are connected to the breast bone. I have tried to keep myself fit but find it almost impossible at the moment, I am now 55 years old and have had this condition since I was 18.
After years of visiting Doctors and being told my neck, shoulder and back problems were probably contributed to stress I finally had an appointment with a Professor for spinal surgery here in Germany he actually took the time to study my MRI scans and concluded that all my problems are probably PA related. He told me I should make an appointment with a good Rheumatologist my house Doctor sent me to an older rheumatologist who didn’t study the disks but agreed with the PA diagnosis but refused to acknowledge any link between the PA and my back problems so gave the diagnosis as unexplained chronic back pain.
This is now my second year suffering from sacroiliac joint pain, I have had so much pain in my buttocks and outside hip area at the top of my legs my orthopedic Doctor diagnosed it as sciatic nerve pain. But the pain I am feeling is also in my groin area it seems to be the whole hip area and I am crippled with this pain when it strikes, when the pain subsides I am dogged with stiffness which is extreme in the mornings. I am in much discomfort for most of my life I am now weary of just walking as it causes my pain, the mornings are the worst I am so stiff that on occasion my wife my help me out of bed and it takes time to get mobile.
Apart from the Spinal Surgery Professor who I visited in 2016 no other Doctor seems to be joining up the dots and I am now getting to the end of my tether I just don’t know where to go to next.
I have just visited a Rheumatologist today 18.10.2018 as the pain in my hips and groin area is severe this summer my inverse psoriasis has been very bad. This new Doctor just after five minutes with him has prescribed me 20mg self-injections of MTX per week for three months. He just didn’t have any time to explain about this drug. I have read it is better to be used at the early stages of diagnosis as I have said I was 18 when first diagnosed back in 1982. All the info I have found seems to be controversial some say that 20mg is too high to start with and other say I’ve had the condition far too long for it to be beneficial. I have also had a Hiatus Hernia since 1985 and take anti-inflammatory drugs to keep the stomach acid at bay. I told the Doctor about this that at the moment I am having problems with the hernia he just waved my comments away and said MTX won’t be a problem and off he went.
I have just spent a week in a Rheumatologist Hospital they done some extensive tests but at the moment I have no swelling in my joints and advised me not to take the MTX because of the lack of swelling. They didn’t seem to be that interested when I told them about the stiffness I get in my muscles and joints or the severe Tinnitus which I suffer with also had trouble with my eyes mainly the left eye dry and feels swollen and foggy the Eye Doctor thinks this is also related to PA . It’s the stiffness that mainly affects my mobility but as I have explained to the hospital I have always suffered from stiffness I have always tried to keep myself in shape being ex-military I have always watched my weight. But from the onset of psoriasis in 1982 I have always had to do such a lot of stretching after exercise. Whenever I do exercise although the most I do these days is walking or light weights it’s as if it’s the very first time I have carried out any sort of exercise the next morning I always suffer from very bad stiffness I’m quite often like Quasimodo walking about. The other thing is my Tinnitus levels increase after exercising this condition is with me 24/7. I am now truly at a loss of what to do these illnesses combined are driving me insane.
With Tinnitus its the stress of these combined illnesses that make it worse. Here in Germany I don’t think there’s as much research into PA as in the USA and UK. The Sacroiliac Joint is used in certain countries to determine a PA diagnosis mine was diagnosed because of the rotten finger nails in both hands and toes. My inverse psoriasis flared up bad this year because of the hot weather this in turn made my hip and groin pain worse.
I just wish that one Doctor would join up the dots and say yes everything is down to PA but now I am wondering could I have Myositis so many years behind me and still sometimes find myself between a rock and a hard place.
1982 Psoriasis
1982 Inverse Psoriasis
1985 Hiatus Hernia
1987 Psoriatic Arthritis
2008 Hospitalized after losing the feeling in right side of face now very sensitive to cold and drafts
2011 Shingles
I’m a little confused … wondering if you wrote this over a period of time as you say you’ve visited the Rheumatologist ‘today’ but give the date as 18th October … Reading between the lines it looks as if the most recent advice you’ve had from Rheumatology (at the hospital) is not to take the Mtx. Is that correct?
Nothing gets things moving like big swollen joints. Yet many folks with PsA do not experience a great amount of swelling. Do you have raised inflammatory markers? While those too often do not feature greatly with PsA, they are another thing that makes rheumys take action.
Is the Rheumy who prescribed Mtx linked to the hospital? Or are you getting conflicting information from different doctors? It could be that a search for a more PsA-aware rheumy is on the cards … or a return to the October rheumy if they are unaware of the hospital’s recent advice to you.
I personally wouldn’t consider 20 mg of Mtx excessive, though I would prefer to start lower and work up to it over a couple of months. I would never dismiss Mtx, it helps many. And if the treatment protocols in Germany (as in so many countries) require at least a trial of traditional DMARDs such as Mtx before biologics can be considered, then there is that added advantage of starting on it.
Took my body a long time to decide to go for flamboyant swelling, but before that I too was Quasimodo. Though usually after rest (e.g. long car journeys) rather than after exercise. Yet you do say that the stiffness is actually worse after a night’s sleep. Do you wake up with extensive stiffness even without prior exercise?
It sounds as if you could have more going on … perhaps not PsA but PsA plus other problems is of course always possible. I don’t know what Myositis is but most diseases seem to enjoy palling up with PsA, just to make our lives more ‘fun’.
I had many years of inverse psoriasis, strangely it just disappeared one day about 10 years before my PsA diagnosis.
I’m not helping much, just hoping that we can get to know you better and try to help you get this confusing and vexing situation clearer. Glad you posted!
Wow, what a story, it’s certainlu been a long journey for you! I’m going to make a few comments and suggestions - they may not work for you, but on the whole, they worked for me.
You clearly suspect everything you’ve described could be explained by PsA, primarily Axial type (spondyloarthritis), and certainly I can’t see why not (though shingles is probably just a coincidence)
That doesn’t rule out other issues like Myositisis, but why not treat the PsA first, as you’ve been diagnosed and know you have that?
Though most people’s back pain in inflammatory arthritis improves with mild exercise, if you have serious inflammation in there, it can make the spinal column unstable, and pain may increase on walking, accompanied by weakness and pain and / or numbness in legs and feet (or if instability is in upper thoracic or neck, arms and face). Though I haven’t seen this well documented, this happened to me in my lower back and the process was explained and confirmed by my physio. Of course the stiffness in the morning also still happens, making it harder to see the patterns.
20mg of MTX is the standard starting dose here in Aus. You only go lower if the side effects are nasty, then you drop back to 10mg for a few weeks, then 15, then 20, then finally 25 if 20 is sort of working but not quite enough, so that particular prescription you mention seems consistent with your PsA diagnosis
I’ve never heard the thing about MTX only being useful early (but if you have a reference I’d be interested?). There is a strong suggestion that early treatment is better for any DMARD, but that horse has bolted for you (I mean it’s too late to worry about that). In PsA, there is a debate about whether MTX is a true DMARD anyway - it can be significantly symptom-modifying, but most people end up on something else as well.
As Sybil said, MTX is often a means to a better treatment, because it is the cheapest, they insist you try it first, before putting you on a usually more effective, but vastly more expensive drug, like a biologic. As such, since the prescribed treatment is consistent with the symptoms and diagnosed disease, why not take it, and if it works, great, and if it doesn’t, the path is cleared to other treatment.
I learnt the drug protocol in my country off by heart. Best to be informed of what they will insist I try first, what the criteria and exemptions are, what the side effects are… and what has the best success rate.
It can be really useful when communicating with your docs to provide specific, quantitative examples of your symptoms. I made the mistake of not doing this and was kind of ignored for a few months. If you can keep a diary that documents things like length of stiffness since waking, daily function (ie can you hang out the washing that day, or brush your hair, or walk to the corner shops, or can’t make it to the mailbox), that can be useful. I had no success focusing on pain as the Rhuem saw that as purely subjective. Finally, I would use this information to try to build a coherent story of what your symptoms are, and how they affect your daily life. Then you’ve got a better chance of connecting with your Rheumy (who aren’t always known for their people skills).
In the meantime, I would research the myositis so that I would notice if there are any patterns that don’t fit PsA, but do fit myositis. This can be really tricky with two untreated diseases.
I am sorry to hear that you are suffering so. Some parts of your description are very similar to my experience. I believe you are in Germany. I am in the US.
I have had significant back pain. Decades worth, beginning with the neck and shoulders, later specifically in the sacroiliac joint, and now also including the whole low back-hip area. MDs here have not been helpful with diagnosis or treatment. I do physical therapy exercises, get massages, use heating pads, and go to a warm water pool once a week for some relief. There is also a portable product, made by Thermacare, for the back that I also sometimes wear under my clothes.
Pain and stiffness increase for me with any immobility. Getting out of bed in the morning, as you mention, is one of the worst times. Sitting also results in pain on movement. Fortunately, it does go away as I continue to move. I haven’t timed how long the pain and stiffness last (and probably should) but my understanding is that this is common with many arthrites, including PsA.
I take methotrexate as an injection. The methotrexate pills caused GERD for me. The injection with tiny needle is much preferable. Methotrexate is usually the first drug tried regardless of when the disease began. I think you may have found or been given some misinformation about it. I’ve also tried the very expensive Humira, but it made no difference in my symptoms.
Thanks for replying I am now on my 4th week of CBD oil I think it has some effect the severe pain is far less but still have the stiffness. My Gerd and Barretts esophagus is stiil quite bad as is my inverse Psoriasis. But I am carrying on with CBD as its a natural product might even try the spray. I have to give up work to stop tge stress the illnesses are bad enough but combined with work it causes no end of problems. I hope u find some sort of relief we do have to put up with a lot with these invisable diseases but tge TINNITUS really makes my life a misery.
I wish you all the best and a very Merry Christmas
I read about the shingles, they suck. I’m 60 years old and had shingles when I was 25 after a bought of pneumonia. I’m surprised with all the stress PSA cause we don’t read about them more often here. Shingles is surely a stress related, immune system depleted, issue.
Curious to see how the CDB oil helps you, I am considering it internally. I have used the suave on my knees with some success. Please keep us updated.