No skin problems apart from dryness

All over body pain, insomnia, lethargy, exhaustion, itchy eyes,pitted nails,heel spurs, Achillies tendonitis, bone spurs on my spine,sausage fingers/toes, crooked finger tips, every limb tender to touch, neck,shoulders, lower back worst affected.

Hi Phillylou, I just want to say I hope your MRI is enough proof that you have inflammatory arthritis and you are able to get meds to help you feel better. Is the prednisone helping??? I had really good results from it, but unfortunately my rheumy and internist said it wasn't something I could have on a regular basis. That forced me to go on Enbrel, for which I'm continually singing praises!

I read your profile and am sure you are at your wit's end with disappointment in your doctors and your sore body! Don't give up hope--it sounds like you're on the right track now!



Grandma J said:

Hi Phillylou, I just want to say I hope your MRI is enough proof that you have inflammatory arthritis and you are able to get meds to help you feel better. Is the prednisone helping??? I had really good results from it, but unfortunately my rheumy and internist said it wasn't something I could have on a regular basis. That forced me to go on Enbrel, for which I'm continually singing praises!

I read your profile and am sure you are at your wit's end with disappointment in your doctors and your sore body! Don't give up hope--it sounds like you're on the right track now!

thanks grandma J , the Prednisolone is fantastic. Got energy , lightness of spirit and feel more like the old me. Just thirsty all the time , don’t know if that’s the drug or just cos it doesn’t hurt so much to lift a water bottle lol x

Hi, Phillylou, and welcome. If the Prednisolone is doing you good, that's certainly an indication of what the inflammation is doing to your body. (Read: all the bad stuff.)

I was in the same boat as you: my only skin complaint was extreme flaky dry skin, and toenail "fungus" that resisted all treatment. It was the rheumatologist who noticed the nail pitting. After that, the dermatologist confirmed that I had psoriasis, and that the dryness was part of the picture. She also discovered a 5p size bit of plaque on one elbow.

It's a strange disease this, and we get it on a 2-for-1 special, Ps and PsA together! What a deal.

Hi seenie, apologies if this reply comes out wrong , I seem to keep pressing wrong buttons.
I’m learning so much about my own body from this site & the sharing of experiences from you kind folks. Symptoms of psoriasis that I’ve had for years but put down to other issues, ie Flexural psoriasis down to menopause hot flashes & sweats . Nail damage down to me being clumsy.
I was brought up to only go to the doc when the hearse was looking for a parking space so learning about my hidden genes & their effect on my body is a total eye opener for me and explains so much. X

For some of us - way too many - looking back and realising just how long these things have been going on is shocking. A few years back I found my diary from 1972 when I was 16. I'd logged the date of an x-ray which was such a novel experience at the time that I'd drawn a picture of me resplendent on what I thought the machine might be like. It showed one enormous left knee ..... which is where PsA first kicked off this time around. I'd forgotten all about that.

I'm not saying I've felt like cr*p solidly since the age of 16 but there have been episodes that perhaps make more sense now. I think one doctor did diagnose my psoriasis correctly but there were many more whacko 'explanations' along the way that made putting up with it seem like the best option. Somewhere in my 40s insomnia / exhaustion, all-over stiffness after car journeys etc., occasional but extreme joint pain etc. etc. came to town. I don't think I went to the doctor about any of these things because basically I was waiting for them to go away .... for about 10 years. However when eventually I was forced to go to show them my whopping big joints they took an age to act.

Hearse ..... parking space ..... I've been grinning ever since I read that!

Glad the steroid is working so well for you, enjoy! Have you got an MRI coming up?



Phillylou said:

Hi seenie, apologies if this reply comes out wrong , I seem to keep pressing wrong buttons.
I'm learning so much about my own body from this site & the sharing of experiences from you kind folks. Symptoms of psoriasis that I've had for years but put down to other issues, ie Flexural psoriasis down to menopause hot flashes & sweats . Nail damage down to me being clumsy.
I was brought up to only go to the doc when the hearse was looking for a parking space so learning about my hidden genes & their effect on my body is a total eye opener for me and explains so much. X

Had the MRI today , hoping it will show if nerves are trapped in the pelvis. I did a fantastic impression of the wizard of oz scarecrow minus straw in December when I lost all feeling in my lower body after a stint in a clarins makeup chair. Took 20 mins of excruciating pins & needles before I could stand and Try to make a graceful exit, walking stick in one hand , daughter holding me up on the other side. At least my make up looked perfect even if the rest of me was somewhat dishevelled . Almost a fur coat & no knickers moment lol x

Why is it that these desperate times seem so funny & ridiculous in retrospect? All mine do too, well most of them, but that sounds like a particularly scary & painful thing to happen.

If the MRI does show trapped nerves, is there a remedy in the offing? I suppose the best outcome would be if they were squeezed by inflamed tissue that PsA drugs could address ..... not that I have a clue what I'm on about.


Phillylou said:

Had the MRI today , hoping it will show if nerves are trapped in the pelvis. I did a fantastic impression of the wizard of oz scarecrow minus straw in December when I lost all feeling in my lower body after a stint in a clarins makeup chair. Took 20 mins of excruciating pins & needles before I could stand and Try to make a graceful exit, walking stick in one hand , daughter holding me up on the other side. At least my make up looked perfect even if the rest of me was somewhat dishevelled . Almost a fur coat & no knickers moment lol x

Apparently , surgery can release the nerves , it involves separating facets, then fusing and hole drilling. Don’t quote me incase I’ve got the order or an element wrong lol,but that’s the last resort I think. Maybe a jab to pad out, like I’ve had in my carpel tunnel wrist trapped nerve combined with meds ? Will be happy to see the results. I know my rheumatologist can’t sort it , it has to orthopaedic surgeon. I already have two brilliant of those, my knee guy and my shoulder guy but of course I will need the hat trick , a spine guy . A full set , with a couple of spares, my foot /ankle guy and my wrist guy . X

Phillylou can you find a rhumy that can do dopler ultrasound as this will show inflammation (extra blood flow in joints)

Hi scooby, I’ve been having blood tests to monitor the inflammation , still showing quite a high result at the moment .ive had 2 MRI , 1 spine ,1 leg & I’ll be having an ultrasound on a kidney problem beginning of June. Had ultra on my wrist to check my carpel tunnel, which resulted in cortisone in left wrist , still getting a little relief but not much . X

Yes, if you or your rheum can find someone who does ultrasound, it is brilliant.

Philly, if you can put it off, I wouldn’t have carpal tunnel release surgery just yet. You may find that, with good treatment, the problem resolves itself. I needed both wrists released. Got one done. Then, when I went on the bio, the other … well, it no longer needed fixing.




Scooby said:

Phillylou can you find a rhumy that can do dopler ultrasound as this will show inflammation (extra blood flow in joints)

For me, the psoriasis was the last thing to happen. I had pain for 20 years before I finally had the psoriasis. And because of that, I wasn't able to get a diagnosis until it appeared. So, while I hate to say it, if you have PsA, it will probably eventually surface, even if it takes several years. :(

I think you might just be right, maeggyn! All I ever had was really dry skin (my dark clothes had "snow" all over the inside), and I had some white stuff under a few toenails. GP said I had toenail fungus, and to start using bath oil. All of this went away when I was diagnosed and I went on Enbrel. After Enbrel failed, I switched to Humira. And lo and behold, although my skin's not as dry as it was, for the first time I have scaly patches on my forehead and scalp. In retrospect, I had PsA for about 20 years before I got diagnosed. True psoriasis emerged five years later.

Strange disease that we have!