Hello everyone! I'm pretty new to the board but I have been dealing with so many health issues the last several years I decided it was time to try to find some online support. I have had moderate to severe psoriasis since age 15 (I'm 43 now) and started seeing a Rheumatologist early this year because of severe pain in my hip that I had dealt with for over a year before I started seeing her. She dx's me with psoriatic arthritis and connective tissue disease and prescribed me methotrexate injections and humira in an effort to keep me from having to have surgery (she also x-rayed my spine and saw some degeneration and spurs). She also prescribed tramadol, flexeril, naproxen.....long story short things kept getting worse and I had to have MRI's done that showed my nerve was being impinged, some stenosis in my neck (no nerve issues there yet but my neck does hurt sometimes). I went to neuro and he prescribed physical therapy and told me to come back for epidural injections if not better in 2 weeks. I went ahead and did the whole 4 weeks of therapy because I didn't want the injections. Then woke up in excrutiating pain about 2 months after ending therapy. I know I'm skipping a lot, but it boils down to this: Rheumatologist and Neurosurgeon both say it is time for surgery. Neuro also stated twice that he thought it was kind of strange my right leg/hip are so effected but not the left side at all. Because of the weakness in my right leg he is sending me for an EMG next week before we schedule surgery. I had never even heard of an EMG before. I'm wondering a million things but I guess my main question for now is do any of you have psoriatic arthritis only effecting your spine? Does the fact that so far the methotrexate and humira don't seem to be stemming the damage add up to a really grim and painful future for me? Thanks so much for reading this ramble-I'm in a lot of pain right now so not as coherent as I would like to be, lol!
Can you get a second opinion? Having only one side effected is common with PsA. Its a type along with having primarily spinal involvement. Something just doesn't sound right.
Do you mean that those are 2 different types of Psa? One that effects primarily the spine. And one that effects primarily one side? Is that what doesn’t sound right? Because it is two different types?
I have PsA of the spine along with symmetrical. My hands, feet and spine are the worst. I have a lot of herniated discs, bulging discs and impingements but I really don't have much back pain, mostly stiffness and SI pain. One of the imoingements gives me incredible hip pain. I walk with a cane. I have had an EMG. I did not like it but not very painful. I have not had to have surgery as I do not have pain there. I have had injections and an epideral L4-5 which relieved the hip pain for about 4 weeks. Then the fungal meningitis deaths happened so i put off any more injections. The spine doctor offered me surgery and I checked with my Rheumy. I do not need spine surgery for stabelizing the spine she said as the PsA in my spine will stabilize it. The stiffness will lead to fusion so it will be stable. I decided not to have it to relieve the pain in my hip because I was getting pain in lots of joints so we changed my biologic. They only last about a year for me then I seem to get immune to them. i started Remicade yesterday. The last few years my elbows became involved and just recently I had my first symptoms in my shoulders. I agree with Lamb, get a second opinion. Surgery is a big deal especially for PsA patients. And welcome to the group. It is a wonderful place with good people. Welcome.
Yes, I put off the injections for a agile because of the meningitis scare too. Finally couldn’t hold out any longer. Dr noticed the weakness in my foot and leg and how he could jab me repeatedly with a safety pin in my foot and leg and I couldn’t feel it. I couldn’t raise my foot at all when he was just gently pushing on it. I don’t really have back pain either-some slight neck and lower back pain every once in a while. But my right hip leg and foot are agonizing. And most of my foot is numb.
There is a type of psoriatic arthritis that is asymmetrical, on one side of the body but not on the other. Another type is spondilitis that affects the spine. I have symmetrical and spondylitis. Sounds like you have asymetrical and spondy. I think the neuro and rheumy are saying you need surgery due numbness in one side and weakness. Sounds to me they are trying to figure out what is PsA and what is caused by spinal problems. Maybe they want to know if your PsA is truly assymetrical or if the spinal problems are causing it to appear that way. Have you spoken to your primary doctor yet? He/she might be a good one for further explaining this to you and offering an opinion. Good luck, I am sending you hugs and prayers.
I have a similar type as well. Basically psoriatic arthritis and spodyitis. It affects all of the joints in my body except for my elbows. I'm 28 now and i was diagnosed last year. I couldn't really walk for a while when i was diagnosed first. I got psoriasis when i was about 10 years old and it got really severe when i was 15/16. I just got diagnosed with fibro last week. You just have to keep to your meds and i find omega 3 is really got. Eat well, sleep well. and de stress. The spine is the most dangerous. I have pinched nerves and carpel tunnel but it all about taking care of your self.
It's terrible that you're having to have surgery, i take it that you're have a hip replacement? You didn't make that clear.. It's definitely not unusual that you it would just be on one side. i get it in all different places because of the type it is.
I would DEFINITELY GET A SECOND OPINION the type of psoriatic arthritis you have is unusual, and the most complicated, I know because I have it myself. If you're doctors don't understand why it's happening find someone who understands it completely before you let them tinker with you. Best of luck hope you feel better :) xxx
I appreciate everyone taking the time to respond! I realize I wasn’t very clear in my original post. I have deterioration in my lower back and neck. The neck has some severe stenosis but isn’t effecting any nerves yet. The problem in my lower back is effecting nerves and is causing a lot of pain in my right hip and leg (actually all the way to my foot). I also have weakness and numbness in that leg and foot. So, although the pain is on the right side, it is being caused by the problems in my spine. Thanks again and all replies are greatly appreciated!
tell me about the hip pain please. i have developed horrid burning and aching in both hips. cant hardly stand it. going to call rheumy tomorrow but curious about what others feel.
Mine is shreeching. It is hot and sharp, I can't put weight on my foot. It hurts in the front, the groin at top of leg/bottom of stomach border. And it hurts on the outside of the hip just below the ball of the joint. And it hurts in the exact center of the hip. It did not respond to hip injections very much but an epidural L4-5 brought complete relief for about a month.
The reason I suggested a second opinion especially in regards to the SURGERY is as you have have probably gathered by now from other posts is that your neurologist apparently is not all that familiar with PsA or he would know about the spondylits type that essentially only effects the spine (about 10% of PsA and more importantly that huge amounts of PsA (about 30%) effects only one side of the body.
That spine to hip pain thing is a pretty standard symptom of PsA normally caused by inflamation in the SI joints (it takes very little to cause a lot of trouble as this joint moves less than 5 degrees and takes luck and some pretty sophisticated MRI studies with contrast to even show up.
Almost everyone over the age 40 has stenosis and some spurs, most Docs (unless they work for a spinal center) don't respond to much it until it is rated as "severe" and even then surgery is not very common. i'm not saying surgery isn't an option BUT it is slippery slope and at only 46, I wouldn't start trying to ski on it. The L 4-5 and T 11-12 area where I would imagine the problems are carry the bulk of weight in your spine. the minute they are messed with surgically the problems move either up or down and then the surgeries begin on about every 5 years until you are totally messed up with redos, more stabilization and surgeries above or below the original.
Now here is the amazing thing! If your problems are PsA/spondylitis related and not (its all art not science) injury, surgery probably won't help for very long BUT the surgery your surgeon will attempt to do is done automatically by your body as needed all you need to do for perfect results is keep moving so that the process of ankylosis happen with everything in the right spot!!!
Seriously all most all of the time injections, excellent pain management and inflammation control will be MORE effective than surgery. in the event surgery is necessary NEVER NEVER NEVER consider a spinal pain center ONLY a teaching hospital and only after several INDEPENDENT evaluations. One of the ways to determine quickly if you are dealing with a cut first guy is when they do an EMG. (BTW until they do an EMG, you have no idea what pain is)
Thank you for the response. What do you mean by the last statement about the emg?
An EMG involves large needle stuck into both ends of nerve/muscles with electricity shot through them to see how well they are conducting electricity. The intent is to decide whether the loss of "function" is from nerve impingement or "pain" It really doesn't prove much of anything as the "impingemen" can be either inflammation or something that can be removed surgically. The test has no way of knowing. My golf buddy (a retired neurologist) calls it a sales tool similar to some of the stuff a vacuum cleaner salesman does.........
The test does work in some instances. For example, it can differentiate between diabetic neuropathy and "impingement". But yes, sometimes the tests can be somewhat useless, and painful.
After re-reading my post and judging from some of the responses, I'm afraid I haven't been real clear about my situation. As I stated before, I have had moderate to severe psoriasis for almost 30 years. Over a year ago I started having severe pain in my right hip. I saw my GP a couple of times during that period and was given cortisone injections. Around March of this year my psoriasis was so out of control I sought out a dermatologist (I live in a small town so the nearest specialists are over an hour away-that's why I have relied on my GP to treat it all this time). Due to the fact that I was also having the hip pain, the derm. wanted me to see a rheumatologist first. She's great-put me on methotrexate and humira injections along with tramadol and flexeril and told me she thought she could keep me from having to have surgery. She took x-ray of lower back, also, which showed degeneration and bone spurs. I had full range of blood work done, too. RA factor was negative so she said it wasn't rheumatoid arthritis but pretty confident about the PsA diagnosis. Also, it maybe neither here nor there, but I have bad Raynaud's, also. A couple of months go by and pain is getting worse and my foot starts going numb. My GP ordered MRI which show the degeneration and nerve impingement and she recommended neurosurgeon. I knew she had recently had neck surgery so I got her to write a referral to her doctor. He went through all the balance tests, heel to toe, poking me with a pin, etc. He also x-rayed my neck which had been bothering me and said there was deterioration/spondylosis. He told me he was prescribing 4 weeks of physical therapy but if it hadn't gotten better after 2 weeks to call him and he would set up epidural injections and that surgery was a definite possibility down the road. I didn't want the injections so I did the full 4 weeks of therapy and it was better-still hurt, but not as much most of the time. I was continuing to to go to my rheumatologist regularly during this time and shared with her what was going on. About a month after completing therapy my neck was bothering me more so my GP ordered MRI of my neck. Findings were degeneration, severe stenosis but no nerve impingement-she recommended treating with pain meds for now. My hip pain was gradually getting worse, also, so I finally decided to try the injections. The day I made that decision the news about the fungal meningitis broke so I held off. Then, during the night in early November, I awoke screaming with the most excrutiating pain in my hip and leg. I couldn't do anything to get comfortable. My husband had to dress me and called my GP who was great about getting me in and gave me a demerol shot that day. I also called to set up the epidural injections, which I stated in my earlier post I had to wait 5 days for. The doctor told me before the injection that there was a chance it wouldn't work and that I had a lot of weakness in my leg. I wouldn't say the injection didn't help at all, but it wasn't much and I really saw no difference after the 2nd injection two weeks later. My GP recommended I go back to the neurosurgeon and prescribed me Lorcet for the pain. I also saw my rheumatologist again and she saw how much pain I was in and gave me a toradol shot and increased my muscle relaxers. She said the humira wasn't going to help me at this point and in her opinion it was time for surgery. I told her I had an appointment with neuro the next day. I actually saw his nurse practitioner who said that it was time for surgery and he felt doctor would want an EMG first because I have severe weakness and numbness in my foot and leg. He left and talked to the doctor, then came back and said doctor did want me to get an emg and this would be a very quick process-EMG and surgery before the end of the year. So-I have already gone all the conservative routes and the medications don't seem to be helping much (except I am psoriasis free for the first time in almost 30 years)! I have a very physically and mentally demanding job (I have been off since this started in November). I am an electrician in an industrial setting and normally have to walk long distances with 20-30 pounds of tools and have to do a lot of climbing including a 130 foot tall crane and a 100 foot tall crane (I figure you all probably are thinking by now that I am a man, lol, but I am a woman). I have become very discouraged by all of this. I know the pain is caused by the disc problems but I am confused why he thought it strange that it was only causing pain on one side-that seems pretty common to me. Also, had anyone had PsA only in their spine and has anyone had it progress rapidly. I mean, at this point I can only see surgery as an option. I have to get back to work and I cannot perform my job in the condition I am in:(
my left side is the side that hurts me ..my foot is numb, my calf muscle twitches and tingles, my knee throbs, and i dont want to talk about how bad my hip and back hurts.....my situation took a nasty turn in january, i had some kind of allergic reaction. Since then ive been spiralling out of control....ive not found a pain med yet that soothes my pain....how can anyone go through this and not get depressed ?