Psoriatic Arthritis/Ankylosing Spondylitis - Opinions Please!!!

Hi, I'm new to this site and wondered if anyone with AS or PSa could give some clues! I've had lower back pain (sacrum) for approx 3 yrs, for the past year it has got significantly worse that I went to see my doctor, I also have arthritis in my thumb and wrist joint, and psoriasis. Doc did ESR which was elevated but not severely, he also did xrays which showed my spine is curved to the left (which is the side it orginally hurt on) but the bones he said are healthy. He sent me away with paracetamol! bearing in mind I never slept as the pain was too severe at night, burning in my lower back and hip, painful shooting pains and severe stiffness which all usually wakes me up at about 3-4am, the stiffness can be so bad that the pain is excrutiating when I try to move. I also have trouble sitting for too long, sometimes a cpl of minutes is enough other times I can sit for alot longer before I have to get up and move around. I can't sleep on my left side or my back, but can on my front if I put a cushion under my hip or if I don't lie straight. I went to see my husbands osteapath hoping that a cpl of sessions would sort my back out as the doc said there was nothing else wrong! osteapath said it was severe inflammatory problem not mechanical back problem and after trying to help with acupunture for 4-5 wks referred me to another doctor with a letter stating inflammation and psoriasis, he also noted that I had bumps and depressions on my nails, although not severe, he also said that xrays can take up to 10yrs to show AS. New doc looked at his letter and referred me to a rheumatologist who I'm seeing in a cpl of weeks, he also prescribed Napraxon which I've been taking for a cpl of months and has helped to the extent that I don't think I could live without it!!! Unfortunately I now have knee pain and stiffness and sometimes ankle pain, and pains down my leg and one of my fingers has started to hurt and now is getting wider(!?) at the top joint and developing a lump on the bone! and back pain and stiffness is now creeping upwards although I haven't had the really severe burning and stiffness that I had before. Went back to doc and he said that I probably wouldn't be able to get completely rid of the pain/stiffness but would have to learn to live and cope with it as it was lifelong, but he said not necessarily psoriatic arthrits. Basically what I'm asking I suppose is, is there anyone with these diseases who could give me their opinion based on their experience of their illnesses as I'm worried in case it is either of those, or if it is something far worse, or that the rhuematologist is going to laugh and tell me it's my imagination, which is probably the most scary one as it has taken so long to get this far! I have been test twice before for RA and had nerve tests for MS, also kidney problems related to diabetis but not tested positive for that. Sorry this is so long! By the way I'm a 39yr old female.

Does anyone know what may be going on in my docs head????!!!!!!!!

Also apart from the difference in the bones on xray/mri - what exactly is the difference in symptoms between the two? I'm under the impression that PSa does not cause severe stiffness and is not a symptom as such.

Yanoula

Hi Yanoula, I don't know if I can really help you but I thought I'd reply anyway. All arthritis of the rheumatoid type causes stiffness especially first thing in the morning and after periods of inactivity. Plus tiredness goes with the territory. Numbness can be caused by swelling blocking the nerve pathways, but there are so many different causes of joint pain you do need to see the rheumy. It sounds as if you might have some osteoarthrits affecting your fingers but as I said I can't really help, I'm not a doctor. But welcome to the site and keep us posted on what the rheumy says to you, goodluck with a diagnosis, golitho.

I have P and PsA. 90% of ppl with nail involvement with psoriasis also have Psoriatic Arthritis. A good Rheumatologist should be able to help you.

I would wait to see your Rheumy - arm yourself with a list of your symptoms and how you have tried to 'self help' with these - hopefully the Rheumy will send you for scans/xrays and make a diagnosis from them. In the meantime try heat pads on your problem areas, I know that works for my AS, I also walk as much as possible, even when I think I cant take one step without crying I will still walk it out. Also try yoga, I do this from a dvd at home.
Hope you get some results in June.
Keep us posted.
Jo

I think you'll get a lot of answers from your rheumatologist. The good news is that if you get a diagnosis of SA or PsA or both, there are lots of treatments available, and for many people they work very well.

I wouldn't worry too much about the difference between SA and PsA. The reality is that the differences between all the autoimmune diseases are not well understood, and sometimes the diagnosis is a judgement call. But there's not that much difference between the treatments, so it can be a moot point. Most of the treatments will also clear up your skin psoriasis and the nail problems too.

Let us know how your appointment turns out!

Hi, Thanks for all the advice, I did look at the Psoriasis Foundation forum and there is lots of info there too. I see the Rheumatologist 10/06, I'm getting worried incase he tells me it's all in my head and there's nothing wrong, which was what my original doc told me! next too agreed there was something but it's taken nearly a year to get this far, which I know is actually quite good considering how long some people take. Luckily living in England I don't have to worry about insurance etc to pay for medication, I sympathise with all the people suffering who haven't got medical insurance in the U.S. and can't afford treatment.

Hi

Just got back from my 10min rheumatologist appointment and feel like crying!. He said to keep taking Napraxon and referred me for physio and go back to him on 09/09, if symptoms still there he will then do 'complicated' tests! well physio said there's a waiting time of approx 10wks which more or less takes me to my next app anyway so don't know what he thinks physio will do in cpl of sessions. In fairness he did talk about psoriatic arthritis but said that joints were not swollen so wasn't sure it was that. So not sure if AS is a possibility or something completely different, I suppose I assumed PSa simply because I have psoriasis and it went wild when all this flared up. So by my next app it will be over a year since it really started hurting and 31/2 yrs since first twinges! I wrote a list of all symptoms so I didn't forget anything and to save time and he never even looked. Hey, maybe Osteapath got it wrong and it is just a bad back, with psoriasis etc. Just know that I've now got another 3months of back pain, thank god for Naproxen.

Sickliz,
Health comes first! I had to go on disability here in Vancouver because i too worked for as long as possible being a single parent. I think if i had done so earlier i could have fixed myself up well enough to get back out in the rat race.
Instead i waited until i needed a full spine fusion...not pleasant but better now and at 46 i am now in a course for Web Design with a new start ahead of me.
Remicade is the only thing i take now aside from the odd Advil but i do regret not taking care of myself sooner, dont be embarrassed, people do need help sometimes through no fault of their own and you can get things under control and get back at it.
It seems with your insurance limitations that disability, even temporarily is a solution, your inflammation like mine can be controlled.
Try not to submit to what you deem inevitable, take care of yourself...
Mike

DO NOT let a doctor tell you the pain is in your mind! I'm sorry it's taking so long for you to see doctors. I would seriously fight to be seen and heard. Start leaving them detailed messages about what you can and can't do. Keep a journal of your daily symptoms. I hope you get a diagnosis and relief soon.

Hi Yanoula,
I hope this note finds you well today, i feel for you as your adventure for diagnosis is something i've lived...similarily.
Your lower back pain sounds like the Sacroilium pain which was for me unbearable at times and gone other times, actually very typical of the big joints that are affected the most with A.S.
Do you tend to have morning stiffness as well, i find even during the day if i stop and lie down to give my spine and all it's Hardware a break i suffer with about a half hour stiffness after that.
It is better with Remicade as the inflammation is much lessened but HOT showers are a help or any heat treatment tends to help feel lubed up enough to at least start the day.
I have family descendants who had A.S and the genetic traits are definitely passed down, do you have any people in your family with similar history, it helped me to know these things.
My youth started with knee and hip pains, large joint pains and a slightly curved spine.
This progressed to full kyphosis(hunch) and about 10%scoliosis(right curve), i am now post surgery but it was a long road to here.
Keep doing your homework, no one can do it for you like you, squeek that wheel and get the grease.
You are 39 years young with a lot of good pain free years ahead of you, i am 46 now and have gone through the ringer to get to a better place today, you too will get there.
I hope i help you in some way, also what physio will do for you is keep the elasticity in your joints, gentle stretching is important...rotator cuff etc., but it will not remove pain caused from an over active immune system.
Please keep in touch....keep smiling...Mike:)

Hiya,
I thought i was the king of crunch. I have been fused with rods and screws to my spine except my neck which still makes a lot of crunching noise. It sound louder than it really is yet sometimes my kids hear it and they think it's rather disturbing.
I dont know about your "Specialist", it's very common for AS sufferers to have this characteristic crunchy sound.
As for turning your head, i have very little mobility there but i do have a little so it was not fused.
Also very common is that feeling of being wooden or more commonly moving in a "boxey" fashion, very rigid, when i look behind me i turn my whole body around ...boxey.
Interesting as my neck and head started to slope forward i learned that the body does this to avoid the pain of holding it up, it's a natural reaction, i also had a the same thing with my shoulders which rounded inward to avoid pain.
Is it possible for you to go to a GP and request a blood test for HLA-B27, just to know for sure whether or not it's AS, then you would be armed with hard data.
It sounds like your mom may have had some immune issues also, im sorry for that.
I dont know if you have had the blood test yet but if positive these "Specialists" would have no other avenue but treatment.
These are very tough conditions to pin down without blood work, but the klebiella and other symptoms are strong indicators.
One more thing, the crunching is usually very tight ligament or soft tissue whic is progressive in nature but as i said yesterday that is the one thing Physio helps. My neck is the one that snaps the worst, i agree it is scary but it is common for AS people i know.
It really bothers me to hear a Specialist put you off like that, i went through many many years of that futility but these days are different with new discoveries and tests and treatments, i have an old Brit doctor here in Vancouver and have had to educate him on some points of AS.
Arm yourself with knowledge, be tough...keep smiling and thank you for sharing.

Hi guys!  I'm actually jumping over from the Ostomy site, as I've been a member of the Ulcerative Colitis and Ostomy forums for about six months.

Anyway.  I am SO HAPPY to see the Psoriasis forum up and going!!!  My little sister is 24 and has suffered for most of her life with this illness and now has this Psoriatic Arthritis.  I would like nothing more than for her to join your chats and learn more about others in similar situations, as my forums have given invaluable support.

I am so just so blown away to see similar terms on here such as Prednisone and Remicade!  I was on Prednisone for two years (40mg) and my sister has been on 20mg for the past two months.  I was also on Remicade for six months to no avail and then opted for my proctocolectomy with a permanent ileostomy.  But that's besides the point...how is Remicade working you guys?  I think it would be just absolutely amazing if my sister and I found ourselves in similar treatment paths for completely different immune diseases!  My sister is a cosmotologist and her hands and fingers are what bothers her the most with the arthrisitc pains.  I feel just horrible for her!!! 

Really, I just wanted to say how happy I am to see that you guys are here and I cannot wait to give my sister the heads up that she has a support group on HealingWell!!!!!

 

Hi Gbuck

Feel so sorry for your daughter I have also suffered with kidney/uti problems since I was about 7yrs old. I was put on a course of long term (1yrs worth) of anti biotics, unfortunately after 6mths I came off them as I caught just about every other infection you could think of, but I was told that the only way to eradicate the bacteria etc was long term use. I hope it works for your daughter.