Hi! I am new to the group and am hoping I can give, as well as receive, advice and support from those of you that know what PsA is and how it can affect so many things.... As an introduction, I have had psoriasis (mainly on elbows since I was around 25 and now on half of my left leg, as well, with dots here and there). I developed severe lower back pain at the age of 32; went to chiropractors for years (looking back, these were "flares" I should have paid more attention to but work and raising four boys took precedence. Eight years ago, the severe joint and muscle pain started. It hurt to be touched. I was diagnosed with R/A and put on Methotrexate for months which did not help. Then went to another Rheumy and he told me I did not have R/A but Fibromyalia so was put on vitamin infusion therapy (? lol)... anyway, I walked away. Eight years later, here I am again. I now have been diagnosed with multi-level degenerative disc disease with stenosis, etc., etc. I also have swollen, painful hands, wrists, ankles, feet, etc. (every joint) - cannot tell if upper joints are caused by spinal issues or PsA. PsA was diagnosed due to my nails/psoriasis; also have Lichen Sclerosus and Celiac; seeing two Rheumys now - once is convinced I have Lupus, as well, but cannot get a positive ANA to confirm. I feel like running again. Cannot sleep at night due to the pain. Pain is fairly constant - I think I am past the "flare" stage now. I started on the Methotrexate (approx. 3 months ago) however, had to stop it due to staph infection and now strep infection (a boo boo on my tummy which came out of nowhere). Let me tell you, I have one super duper immune system and this would never have happened if I had not started the Methotrexate. Sorry I am so long-winded ... I have two questions: 1) Can my spine disease be caused by PsA - in your opinion - both Rheumys say no, however the Orthopaedic said YES! 2) I am researching homeopathic treatments for inflammation, etc. I also have Lichen Sclerosus (yuck!) and did find a homeopathic cream that works so this has encouraged me to look further for holistic treatments for both PsA and undiagnosed Lupus (my kidneys are affected and I have additional symptoms; just missing the positive ANA factor). I am thinking of going to raw foods and trying to keep my system more alkaline ... Am I crazy or has anyone had any luck trying the holistic route? Thank you so much! Whew! Sorry again for being so long-winded ... Just so happy to have all of you who may understand what I am saying ...
Welcome to the boards
Multi-level degenerative disc disease with stenosis is present in 80% of people over the age of 50. If you want an expert opinion on Arthritis, your best bet is to ask an expert on arthritis (a rheumatolgist) I would suggest perhaps a dififferent orthopedic surgeon. Even if you did have spinal arthritis it would be marked by erosions (RA) and/or osteophytes (PsA, AS and OA)
There is not one shred of evidence that Multi-level degenerative disc disease with stenosis except in vary advanced cases is the cause of pain unless there is nerve impingement. (thats a seperate test done by a neurologist) Half with Multi-level degenerative disc disease and stenosis have pain half don't. More common are surgeons trolling for business. I have never heard of vitamin infusion therapy for anything let alone fibro, but there are lots of things I haven't heard of. There are members here more familiar with holistic stuff than I. It doesn't do any harm. But as this disease is a genetic deficiency of your immune system, it not likely that food will alter your DNA or genes. (You might feel a bit better though with a healthy diet) Medications help most folks when the right combo is found but it takes some time. there is also an abundance of evidence they slow the disease. No such evidence that any holistic approach does so
Thank you for your input, tntlamb. I did not mean to sound "special" in any way regarding my spine as I am sure others are suffering more than I, however, surgery is not an option, and at age 45 I was told I had the spine of an 85 year old woman. Last year, I was told I have 1 to 5 years before I am wheelchair bound. Just wondering if anyone else has experienced these types of spinal issues with PsA. I have been tested for A/S, as well, and do have osteophytes, spondylarthropies, nerve impingement, lots of pain, etc. Just trying to figure out where it came from since Ortho says PsA but Rheumies say "no".. ... You seem very knowledgeable ... I appreciate your input :).
tntlamb said:
Welcome to the boards
Multi-level degenerative disc disease with stenosis is present in 80% of people over the age of 50. If you want an expert opinion on Arthritis, your best bet is to ask an expert on arthritis (a rheumatolgist) I would suggest perhaps a dififferent orthopedic surgeon. Even if you did have spinal arthritis it would be marked by erosions (RA) and/or osteophytes (PsA, AS and OA)
There is not one shred of evidence that Multi-level degenerative disc disease with stenosis except in vary advanced cases is the cause of pain unless there is nerve impingement. (thats a seperate test done by a neurologist) Half with Multi-level degenerative disc disease and stenosis have pain half don't. More common are surgeons trolling for business. I have never heard of vitamin infusion therapy for anything let alone fibro, but there are lots of things I haven't heard of. There are members here more familiar with holistic stuff than I. It doesn't do any harm. But as this disease is a genetic deficiency of your immune system, it not likely that food will alter your DNA or genes. (You might feel a bit better though with a healthy diet) Medications help most folks when the right combo is found but it takes some time. there is also an abundance of evidence they slow the disease. No such evidence that any holistic approach does so
I had no impression you thought you were "special" understated if anything. It sounds like you are getting a "strict" interpretation from some and less so from others.
I don't know that I know much at all. But one thing I can vouch for is this whole mess is like house of cards or cascading failures.... On autoimmune problem is NEVER the case, its more like a book. What I have l;earned is to throw EVERYTHING one can at this thing (or things) meds, diet, therapy and if it would help paining onself blue and dancing naked under a full moon if thought it would help...........
There are so many layers to this disease its impossible sometimes to know what is working (or what is not) We could be solving a problem and not even know it because there are so many others we do see..............
That was my MTX experience. I didn't even realize I was getting relief from peripheral stuff because my back hurt so dang bad. Once I got my back under control and went back on the MTX because my wrists were driving me nuts I remembered. weird stuff....
LOL ... you are absolutely correct! Too many layers and these autoimmune issues are so dang hard to differentiate. The MTX did work well for the one fretful issue I had; it disappeared and I had forgotten about until I stopped taking the MTX; it was then when I had to find an alternative treatment until the infections went away and I could either go back on the MTX, Humira or whatever else they threw at me. One of the two Rheumys I see (neither I like very much) actually told me I was poisoning myself with MTX and pushed the newest drug out (Symboni) which of course my insurance would not cover. I don't see the difference between MTX and Biologics myself; they both come with very scary warning labels (I know aspirin does, too, but I have experienced what those warnings cause so am a little more hesitant). Plus, I believe I am past the flare stage and have graduated into the chronic stage that is my daily friend ... That is why I am searching for something that may help us without risking us more in the process. Maybe I am just one of the lucky ones that when my immune system is zapped by MTX, I am courted by the many infectious diseases lying around, which by themselves can be quite serious. There has to be an answer for us. I am not ready to give up my search quite yet. Never thought of painting myself blue and dancing under the moon ... I can hear the dogs howling now! lol. I am so very sorry for your pain ... just know I am right there with you :).
tntlamb said:
I had no impression you thought you were "special" understated if anything. It sounds like you are getting a "strict" interpretation from some and less so from others.
I don't know that I know much at all. But one thing I can vouch for is this whole mess is like house of cards or cascading failures.... On autoimmune problem is NEVER the case, its more like a book. What I have l;earned is to throw EVERYTHING one can at this thing (or things) meds, diet, therapy and if it would help paining onself blue and dancing naked under a full moon if thought it would help...........
There are so many layers to this disease its impossible sometimes to know what is working (or what is not) We could be solving a problem and not even know it because there are so many others we do see..............
That was my MTX experience. I didn't even realize I was getting relief from peripheral stuff because my back hurt so dang bad. Once I got my back under control and went back on the MTX because my wrists were driving me nuts I remembered. weird stuff....
PsA, AS, RA, lupus, sometimes I wonder if these are all just different stations along the same railway, or the autoimmune equivalent of the Chinese restaurant menu: pick any two symptoms from column one, three from group two, etc. I am not sure anybody has a classic case of any of these diseases. Lucky for us, the same drugs treat many of them.
As far as alternative treatments go, most the posts I've read on this and other forums are from people who deeply regret the time they spent trying to get improvement by going gluten-free (or howling at the moon) instead of spending the time to find the right drug combo.
Thank you, Louise. I guess I am an optimist, especially since the MTX is causing so many issues with me. When I get zapped, all the little bugs come a'callin :), and they seem to be just as dangerous. I love your Chinese restaurant comparison ... so true. I know I have PsA, Celiac (have to be gluten free LOL), etc., etc. :)
Louise said:
PsA, AS, RA, lupus, sometimes I wonder if these are all just different stations along the same railway, or the autoimmune equivalent of the Chinese restaurant menu: pick any two symptoms from column one, three from group two, etc. I am not sure anybody has a classic case of any of these diseases. Lucky for us, the same drugs treat many of them.
As far as alternative treatments go, most the posts I've read on this and other forums are from people who deeply regret the time they spent trying to get improvement by going gluten-free (or howling at the moon) instead of spending the time to find the right drug combo.
Celiac is one nasty disease. The good thing about the current gluten-free fad is that it makes it much easier for people with celiac disease to find food!
I’m eating mostly gluten free and have cut back on red meat and limiting the amount of meat I’m eating. I am also looking at buying only organic meat. I will continue to play with my diet as I believe that healthy foods can help and certainly won’t hurt to try. There are many healing qualities in foods and even if they don’t help the PSA they may help fight obesity and help with any heart issues that are linked to PSA. Every body is different, what works for one may not work for another.
Hi, I had ‘allergy testing’ at the Naturapaths office. I cut out the foods I reacted to and started taking turmeric capsules. I do feel a bit better doing that than when I cheat on the foods or miss the turmeric. I feel that; similar to TntLamb; throw what ever you can that is safe to throw at it. I have noticed a huge difference in gi upset. Used to have more noxious events and cramps in my belly. After switching off dairy and a few other things that system is way more happy (as is my family). I think the more you can ‘Do’ the more you feel positive which in turn helps you feel better. If you want to try food elimation take it one at a time or else you may not know which food affects you. Good luck.
Thank you, Kirsten! I have Celiac so have already stopped eating gluten (made huge difference in cramping, bloating, weight gain, etc.... just like you said); I have also taken myself off of dairy foods as I don't think they are very healthy unless I can get something truly organic. You are correct. I have gone years without a cold ... until I started the MTX. Now I have gone from a staph infection to a strep infection (in the same place ..did not know that could happen) and it is still not going away. So not sure what to expect next. Believe it or not, I am hoping my immune system kicks back in and gets rid of these things. They actually scare me more than what I am used to (pain, tremendous fatigue, etc... at least I know where it is coming from and that usually knocking myself out for 12 hours will sometimes do the trick and last a day or so). Maybe I am in the pipedream stage now (past the flares/chronic and desperate), but I just have to keep hoping there is something out there that can help us with fewer side effects. It was so nice to hear from you!! Hope you don't think I am crazy ... lol
Kirsten said:
Hi, I had 'allergy testing' at the Naturapaths office. I cut out the foods I reacted to and started taking turmeric capsules. I do feel a bit better doing that than when I cheat on the foods or miss the turmeric. I feel that; similar to TntLamb; throw what ever you can that is safe to throw at it. I have noticed a huge difference in gi upset. Used to have more noxious events and cramps in my belly. After switching off dairy and a few other things that system is way more happy (as is my family). I think the more you can 'Do' the more you feel positive which in turn helps you feel better. If you want to try food elimation take it one at a time or else you may not know which food affects you. Good luck.
Thank you, Tara! I am doing the cold water fish and greens thing... luckily food is not that important to me. You would not know it by looking at me, but it is not, so altering it does not bother me one bit. I hope you find what works for you .. I am getting there :)
Tara said:
I'm eating mostly gluten free and have cut back on red meat and limiting the amount of meat I'm eating. I am also looking at buying only organic meat. I will continue to play with my diet as I believe that healthy foods can help and certainly won't hurt to try. There are many healing qualities in foods and even if they don't help the PSA they may help fight obesity and help with any heart issues that are linked to PSA. Every body is different, what works for one may not work for another.