I'm new here and am looking for others who might have the same experience as myself. I don't have any psoriasis. I used to get an itchy head when I was younger, but don't really anymore as long as I use certain organic shampoos. It started about 5 years ago when I had swelling in one finger. Now, generally in the winter only, I get swollen joints in my finger, as well as the sausage swelling. Sometimes I get it in my toes. I think I have a flair in the ball of one foot as it's been sore for a month or so now. I do get pain in my spine, but don't know what it's from. I had an x-ray and it was fine. I went to a rheumatologist but he only offered my injections in the joints, which honestly, it's annoying but the pain doesn't warrant any medication. Just wondering if anyone else has similar symptoms or has had similar symptoms! My heart goes out to everyone who has so much pain.
Hi there, Bone-a-Fide! Welcome to our exclusive club, although I’m sorry you’ve had to. I’m impressed that you were diagnosed with such mild symptoms, and no Ps! How did that happen? Most of us have suffered for ages and puzzled lots of docs before getting a diagnosis.
One of the things you can do is look at peoples’ profile pages, and read part of their story. I think you’ll be surprised by how much company you have with your symptoms. I know I am!
Take care, post often!
I agree, and often wonder if I do have the correct diagnosis. Although I don't have the symptoms of any other arthritis, and I tested negative for RA. Thanks for the welcome!
The sausage finger and itchy head are enough for me. Some P is so hard to see it takes a while to really see. I have inverse and guttate which means I have red lines in folds like under my breasts and my glutteal fold. and small round areas on my legs that look like really tiny tea drop burns. Sometimes they get large and angry. My primary once treated me for ring worm. I looked at it under a black light as it didn't heal after 6 months of treatment. It did not florese (ring worm would) and it was P. I also have an itchy scalp with a small reddened areas like burns. I wish you didn't belong in our club (for your sake) but I fear you do so welcome!
Yes Michael, I sort of think the same thing. I have read so many books and journal articles, and all point to the PA! Thanks for the reply!
Hi
I have been diagnosed with “mild” PsA also. I have swelling in mostly my right hand and synovitis (basically inflammatory arthritis) in several fingers. I’ve never had a “sausage finger” or toe. At first when I read about that, I thought that I did, because several fingers are always swollen. I have pain in my neck and sometimes in my back. One foot has Plantar fasciitis, a bunion and a heel spur. The foot doc says its all structural problems, but I’ve read how those symptoms are typical of PsA. And my big toe has started to get the psoriasis under the nail. It doesn’t seem like that’s just a coincidence that Ps started on the nail at the same time that I had to go to a podiatrist b/c I was limping from pain in that foot.
I’m curious about your statement: “I went to a rheumatologist but he only offered my injections in the joints, which honestly, it’s annoying but the pain doesn’t warrant any medication”
I, myself am confused about treatment. Originally I was told to take NSAIDs and make an appointment with my General Practitioner if a joint swelled with redness and heat. I haven’t had that, but I have had an increase in my pain level in my joints in the past year that has limited my ability to enjoy my life like I used to.
Everything I read abou RA and PsA says to treat it aggressively right from the beginning. Mine has been very slow in its progression. Psoriatic nail symptoms started 15 years ago! Around that time a Rhuemy said I had “possible fibromyalgia”. How’s that for a non-diagnosis?
So, I have just added more questions than answers, as I am a newbie too. Welcome to the group!
I have very little psoriasis in the scalp and occasion lo it pops up on my knees and elbows passed this off as dry skin for ages but showed the rheumy and he said it was psoriasis. I have swelling on the wrists and nodule lumps on the back of my hands where the knuckle joint is. I also have spinal and sin joint involvement and have had a MRI for this .Dont understand why they are only offering you the steroid injections as mine is classed as severe and I have enbrel arcoxia leflunamide amitriptyline and tramadol and a steroid injection every time I visit the rheumy
Mild or severe? Depends who you’re seeing. It took years to figure out that what ailed me wasn’t Osteoarthritis, even though I had all the symptoms of inflammatory disease, as well as nail issues. (OK, the signs were subtle, but they were there.) My first rheumatologist said my disease was mild. My gut feeling was that it was worse than that. It took me a while to decide, but eventually I went for a second opinion at a highly specialized PsA clinic. Their verdict: very severe PsA, a lot of damage. I fired the first rheumie and the ultra-specialists are now masterminding my treatment. I am now making good progress.
If you aren’t completely comfortable with, or confident of, your diagnosis, it’s definitely worth going for a second opinion. By the time I did that, I’d lost my hip.
Seenie, where did you find this highly specialized PsA clinic? I am ready to fire my rheumatologist also, but don't know where I can find better treatment. I'm in Canada but would be willing to travel to get the best treatment.
Seenie said:
Mild or severe? Depends who you're seeing. It took years to figure out that what ailed me wasn't Osteoarthritis, even though I had all the symptoms of inflammatory disease, as well as nail issues. (OK, the signs were subtle, but they were there.) My first rheumatologist said my disease was mild. My gut feeling was that it was worse than that. It took me a while to decide, but eventually I went for a second opinion at a highly specialized PsA clinic. Their verdict: very severe PsA, a lot of damage. I fired the first rheumie and the ultra-specialists are now masterminding my treatment. I am now making good progress.
If you aren't completely comfortable with, or confident of, your diagnosis, it's definitely worth going for a second opinion. By the time I did that, I'd lost my hip.
When I was offered the injection into my joint, I wasn't offered any alternatives. I got a new rheumatologist, and she offered me anti inflammatories, but I don't even have any symptoms at the moment! I'm looking for a definitive diagnosis, which isn't happening, then I'd like to explore some more natural options first. I only ever suffer in the winter, so by the time I saw the new Dr, my flares were gone. She told me that it seemed more like osteo at the moment, but that's because she can't visibly see my flair (which I understand). She did lots of bloodwork, and it's all negative or fine. So confusing! I also had x-rays done on my spine and foot, and they are fine too- which I am understanding is normal with PA unless it starts deforming the joints. I really find the doctors just make educated guesses because there isn't always a test to say yes or no :(
Chancy,
You can get into this clinic, which is in Toronto, if you have a diagnosis of PsA from a rheumatologist. You do need a referral, either from the rheumatologist or from your GP.
The info is here:
http://www.uhn.ca/Arthritis/PatientsFamilies/Clinics_Tests/Psoriati…
The info here
http://www.uhn.ca/docs/HealthInfo/Shared%2520Documents/Psoriatic_Ar…
is more complete, but I’ve been having problems getting the page to load.
I don’t know how they handle referrals from out-of-province. You’d have to make enquiries about that. Best of luck with this: they are amazingly thorough and knowledgeable there. And kind!
Seenie
chancy said:
Seenie, where did you find this highly specialized PsA clinic? I am ready to fire my rheumatologist also, but don’t know where I can find better treatment. I’m in Canada but would be willing to travel to get the best treatment.
Seenie said:Mild or severe? Depends who you’re seeing. It took years to figure out that what ailed me wasn’t Osteoarthritis, even though I had all the symptoms of inflammatory disease, as well as nail issues. (OK, the signs were subtle, but they were there.) My first rheumatologist said my disease was mild. My gut feeling was that it was worse than that. It took me a while to decide, but eventually I went for a second opinion at a highly specialized PsA clinic. Their verdict: very severe PsA, a lot of damage. I fired the first rheumie and the ultra-specialists are now masterminding my treatment. I am now making good progress.
If you aren’t completely comfortable with, or confident of, your diagnosis, it’s definitely worth going for a second opinion. By the time I did that, I’d lost my hip.
Seenie
How did one Rheumy diagnose mild PsA and another very severe PsA, a lot of damage. How does that happen that two docs can have such different outcomes in their analysis?
I’m curious b/c I’ve been told mine is mild too. Some days it feels mild and some days it doesn’t.
Clr said:
Seenie
How did one Rheumy diagnose mild PsA and another very severe PsA, a lot of damage. How does that happen that two docs can have such different outcomes in their analysis?
I'm curious b/c I've been told mine is mild too. Some days it feels mild and some days it doesn't.
Seenie said:
Chancy,
You can get into this clinic, which is in Toronto, if you have a diagnosis of PsA from a rheumatologist. You do need a referral, either from the rheumatologist or from your GP.
The info is here:
http://www.uhn.ca/Arthritis/PatientsFamilies/Clinics_Tests/Psoriati...
The info here
http://www.uhn.ca/docs/HealthInfo/Shared%2520Documents/Psoriatic_Ar...
is more complete, but I've been having problems getting the page to load.
I don't know how they handle referrals from out-of-province. You'd have to make enquiries about that. Best of luck with this: they are amazingly thorough and knowledgeable there. And kind!
Seenie
chancy said:Seenie, where did you find this highly specialized PsA clinic? I am ready to fire my rheumatologist also, but don't know where I can find better treatment. I'm in Canada but would be willing to travel to get the best treatment.
Seenie said:Mild or severe? Depends who you're seeing. It took years to figure out that what ailed me wasn't Osteoarthritis, even though I had all the symptoms of inflammatory disease, as well as nail issues. (OK, the signs were subtle, but they were there.) My first rheumatologist said my disease was mild. My gut feeling was that it was worse than that. It took me a while to decide, but eventually I went for a second opinion at a highly specialized PsA clinic. Their verdict: very severe PsA, a lot of damage. I fired the first rheumie and the ultra-specialists are now masterminding my treatment. I am now making good progress.
If you aren't completely comfortable with, or confident of, your diagnosis, it's definitely worth going for a second opinion. By the time I did that, I'd lost my hip.
chancy said:
Thanks for the information, Seenie. I live 3 hours away (by plane) so I could go there. I do have a diagnosis of PsA from a rheumatologist and I know I could get a referral from my GP. It's great to belong to a group of people who are willing to help each other and offer their advice. Thanks again.
Seenie said:Chancy,
You can get into this clinic, which is in Toronto, if you have a diagnosis of PsA from a rheumatologist. You do need a referral, either from the rheumatologist or from your GP.
The info is here:
http://www.uhn.ca/Arthritis/PatientsFamilies/Clinics_Tests/Psoriati...
The info here
http://www.uhn.ca/docs/HealthInfo/Shared%2520Documents/Psoriatic_Ar...
is more complete, but I've been having problems getting the page to load.
I don't know how they handle referrals from out-of-province. You'd have to make enquiries about that. Best of luck with this: they are amazingly thorough and knowledgeable there. And kind!
Seenie
chancy said:Seenie, where did you find this highly specialized PsA clinic? I am ready to fire my rheumatologist also, but don't know where I can find better treatment. I'm in Canada but would be willing to travel to get the best treatment.
Seenie said:Mild or severe? Depends who you're seeing. It took years to figure out that what ailed me wasn't Osteoarthritis, even though I had all the symptoms of inflammatory disease, as well as nail issues. (OK, the signs were subtle, but they were there.) My first rheumatologist said my disease was mild. My gut feeling was that it was worse than that. It took me a while to decide, but eventually I went for a second opinion at a highly specialized PsA clinic. Their verdict: very severe PsA, a lot of damage. I fired the first rheumie and the ultra-specialists are now masterminding my treatment. I am now making good progress.
If you aren't completely comfortable with, or confident of, your diagnosis, it's definitely worth going for a second opinion. By the time I did that, I'd lost my hip.
Oh yes, good question: how does one rheumie say mild and the other say severe? Long story, and I don’t want to hijack Bone-A-Fide’s thread. I will post something in blogs later this evening or tomorrow.
Seenie
I noticed pain in my dip joint of my right pointer finger. I went to my primary and he sent me to a rheumatologist. The rheumatologist said he could feel swelling in my finger joint and in several of my toe joints on both feet. I've never had sausage swelling and can't even tell my toes and fingers are swollen by looking at them. I do have pain, but cannot take NSAIDs due to an allergy.
Bloodwork is negative for rheumatoid factor and xrays of hands and feet are negative for joint damage.
The only reason I was given a PsA diagnosis is because I had psoriasis during my teenage years. I haven't had psoriasis in 20+ years.
I, too, feel like maybe I don't have the correct diagnosis. Maybe I have inflammation in my toes and fingers from something else. I am also looking at natural remedies because I have allergies/sensitivities/intolerance to many medications and foods.
After 3 months on prednisone, I'm stopping tomorrow. I've been on MTX for 7 weeks and am thinking about stopping that, too. There doesn't seem to be any improvement after taking these strong meds. I have most of the terrible side effects, but no relief in pain and inflammation.
I started an anti-inflammatory diet in the hopes that it may help my condition. Good luck to you, Bone-A-Fide.
Bone-A-Fide said:
When I was offered the injection into my joint, I wasn't offered any alternatives. I got a new rheumatologist, and she offered me anti inflammatories, but I don't even have any symptoms at the moment! I'm looking for a definitive diagnosis, which isn't happening, then I'd like to explore some more natural options first. I only ever suffer in the winter, so by the time I saw the new Dr, my flares were gone. She told me that it seemed more like osteo at the moment, but that's because she can't visibly see my flair (which I understand). She did lots of bloodwork, and it's all negative or fine. So confusing! I also had x-rays done on my spine and foot, and they are fine too- which I am understanding is normal with PA unless it starts deforming the joints. I really find the doctors just make educated guesses because there isn't always a test to say yes or no :(
Spammy- I strongly encourage you to make these medication changes with your doctor. Prednisone needs to be tapered. . .I don't know what dose you are on, but 3 months is a while. And MTX and other DMARDs can take up to 6 months to work. 3 months isn't really a fair trial. Changing your diet and seeing if you have any changes is a reasonable idea, but coming off the meds completely might cause you real problems. If you're having issues with side effects, there are other meds that can be taken.
Spammy said:
I noticed pain in my dip joint of my right pointer finger. I went to my primary and he sent me to a rheumatologist. The rheumatologist said he could feel swelling in my finger joint and in several of my toe joints on both feet. I've never had sausage swelling and can't even tell my toes and fingers are swollen by looking at them. I do have pain, but cannot take NSAIDs due to an allergy.
Bloodwork is negative for rheumatoid factor and xrays of hands and feet are negative for joint damage.
The only reason I was given a PsA diagnosis is because I had psoriasis during my teenage years. I haven't had psoriasis in 20+ years.
I, too, feel like maybe I don't have the correct diagnosis. Maybe I have inflammation in my toes and fingers from something else. I am also looking at natural remedies because I have allergies/sensitivities/intolerance to many medications and foods.
After 3 months on prednisone, I'm stopping tomorrow. I've been on MTX for 7 weeks and am thinking about stopping that, too. There doesn't seem to be any improvement after taking these strong meds. I have most of the terrible side effects, but no relief in pain and inflammation.
I started an anti-inflammatory diet in the hopes that it may help my condition. Good luck to you, Bone-A-Fide.
Thank you, Stoney. I tapered for 3 weeks on doctor’s instructions. I am unable to take sulfasalazine due to an allergy. I’m probably looking at biologics next, but get anxiety from needles. The mtx side effects have been difficult even with the folic acid. When I talked about the side effects, the rheumy said I can stop the meds. I know this process seems to take a long and winding path after reading many posts here. I’m grateful for the support and am calling the rheumy today.
That was the way it was for me for years. It took a major flare with both feet, hand and knee before the Dr's starting me on any regular meds. They still didn't diagnose it as PsA until I got a small patch of plaque psoriasis in my hair. I did find during my research that there are different types of psoriasis. I know I have had pustular psoriasis several times and plaque psoriasis only one time before and it was on my leg, not in my hair. Which organic shampoos do you use, I sure would like to get rid of the psoriasis in my hair. I have had it for over two years and none of the shampoos or meds I've been given seem to make any difference.
I'm sorry your in pain. I've started the mantra "Its just pain". I say it silently to myself so that I can get up and exercise and keep going. It helps me....better than feeling sorry for myself, which I have done in the past and will probably do upon occasion in the future.