Anyone with Dish?

Sapp50

Hello Everyone

I was recently diagnosed with DISH aka Forestier's Disease or Idiopathic Skeletal Hyperostosis, would like to chat to others affected. Dish is degenerative and can affect all areas of the body. Currently taking Acroxia NSAID 90mg daily which does help but gives me heartburn and upsets my stomach!!

Can anyone share their experiences of the condition ?

Kind regards

stickywicket

Hello Sapp50. It's nice to meet you but you have me stumped there. I don't think I've ever heard of this. I hope someone has but I can't remember it ever being discussed on here.

Sapp50

Hi Stickywicket

Thanks for your reply. I hadn't heard of it either until diagnosed, apparently is quite common symptoms are very similar to Psoriatic Arthritis. I do recall seeing a post from someone in November with the same condition on one of the forums but I had'nt signed up and I don't think she received many responses either.

Nevermind I'll wait and see.

kind regards

stickywicket

If the symptoms are similar to PsA, is the treatment also similar? Because I know that, for PsA, you'd need to be on DMARDS or something stronger, not just anti-inflamms. Also, if the anti-inflamms are messing with your stomach please ask for a stomach-protecting med to take with it. It's very important not to just put up with the symptoms as it means the meds are doing damage in there.

Sapp50

Think I am still at the experimental stage in terms of meds. Seeing my GP tomorrow to discuss follow up apppointment with Rheumatologist isn't till March. I understand they ( health professionals) will prescribe various forms of medication until they find the right one including DMARDS.

Thanks for the advice, take care for now.

dreamdaisy

Hello again, Sapp50, I read with interest Sticky's reply as I have PsA and have tried a wide range of meds for it. I've been lucky viz. side effects in that I rarely experience any (or at least if I do they don't bother me that much) and I hope we will be able to guide you through the maze of meds because they can appear to be bewildering on first aquaintance. DD

Sapp50

Hey DD
Thanks for that, it is nice to know I can use this forum for support as it can be difficult to discuss these issues with people that don't understand what you are going through. i am leaving the forum now as my neck is getting stiff.

Have a blesssed and painfree day

barbara12

Hello Sapp50
And welcome to the forum, sorry I wont be able to offer any help, but like the others have said, at the very least they can offer advice on your meds.
And you always have us to unburden yourself on x

dreamdaisy

We all vary in our conditions but many of us are taking the same meds or tried each and every one that's available! I'm on a pretty good combination now (after many trials and huge amounts of error) but it's only good inasmuch as the PsA is controlled albeit too late to be of useful benefit. DD

wall1409

http://www.experienceproject.com/groups/Have-Forestiers-Disease/95204
Take a look seems to be a forum for this. Can you tell I am on the sick bored silly

Hope it helps

Wendy x

wall1409

Oh and http://www.medicinenet.com/diffuse_idiopathic_skeletal_hyperostosis/article.htm

I need hobby, mind you I have also researched ready incase DLA review gets refusal then its appeal and I am armed and ready

Wendy x

stickywicket

Sapp50 wrote:

i am leaving the forum now as my neck is getting stiff.

Do you ever use a surgical collar? I rarely use mine but take it everywhere with me as it makes a massive difference if I do get neck problems. They are not to be used all the time as that would encourage the muscles to stop working but, for an hour or two, some days, they can be very helpful. It's so long since I got mine I can't remember who referred me to orthotics for it - GP or rheumatologist - but I'd guess either of them could.

Sapp50

Thank you all for your kind thoughts and suggestions, I really appreciate it.
Wall1409, I've continued to surf the web for information on DISH since I was diagnosed Sept 2012 there are so many and the majority are American with varying views about how Dish can affect you, some quite scary. Nevertheless, I am trying to be positve about it, like everyone esle I have good days and not so good days when the pain in unbearable throughout my body but mainly in my back, shoulders neck and feet. I'am slowly coming to terms with it all.

Stickywicket, will probably have a chat with my Dr about the collar when I see her tomorrow.

Barbara12 and DD thanks for your kind words, I realise it will take time to find the right meds for me, it's trial and error!

Take care for now

frogmorton

Hi Sapp50

Just a quick hello from me and welcome to our forums.

Here we have people with many different forms of arthritis so you should feel at home with us lot

I too hadn't heard of this, but had a quick google. Not surprising a lot of us haven't heard of it with there being over 200 types of arthritis.

I look foward to seeing you post in the future

love

Toni xxx

Sapp50

Hey Frogmorton

Thanks for the encouragement.

Take care for now

tjt6768

hi Sapp.. just a quick welcome from me too...
Hope you find yourself at home here

Sapp50

Hey Toni

Thanks for the warm welcome, people have been great on the forum will certainly help to maintain some sanity

Take care for now

pauline23

Hi,
My Chiropractor diagnosed me as having DISH, after taking an X ray of my neck, just before Christmas.

She wrote to my GP and when I asked him about my condition he said that he had never heard of DISH but was sure that it was "just wear and tear" and sent me away with a repeat prescription for pain killers.

Like you, I've read a lot of scary stories about it on the web and I'd be extremely interested to hear what your Rheumatologist has to say, if you don't mind letting me know.

stickywicket

Hi Pauline and welcome to the forum. I'm afraid, as I said earlier in this thread, DISH is a complete new one to me. However, if it's similar to PsA and you might have it, you should probably ask to see a rheumatologist.

pauline23

Thanks for the reply. Yes, I think I'm going to have to ask to see a Rheumatologist.

Typical of me to have something that no one, including my Doctor, seems to have heard of.

stickywicket

I guess it will mean you have to be more pro-active than most :roll: Definitely push for the rheumatologist though as, if you need the sort of meds used for PsA, only the specialist can prescribe them.

pauline23

I will. Thanks Sticky.

Sapp50

Hi Everyone
I haven't been on the forum for a while due to the problems I was experiencing with my neck.
I was seen by the Dr in regard to the heartburn and upset stomach I was experiencing with the Acroxia, She has prescribed 20mg Omeprazole Capsules which I must say have helped, she also suggested I persevere with the Acroxia for the time being as I will be seeing the Rheumatologist in March. No luck with the Neck collar stickywicket as she thinks I should only stay on the PC for short periods and not until my neck locks from the stiffness. I will keep you all informed of developments

Hi Pauline welcome to the forum, sorry I have not been able to respond to your posting before now. Yes you should definately pursue an appointment with a Rheumatologist, my DISH was discovered after an emergency admission to hospital, thought I was having a heart attack and was rushed to A&E, after various tests Xrays and Scans the condition was discovered via an MRI Scan suffice to say was in total shock but the symptoms had presentrd for sometime and I chose to ignor them due to the pressure I was under at work ie intense upper and lower back pain, stiff neck, shoulders at the end of the working day. Don't let your GP fob you off with excuses He/she has a moral duty to refer you on and find out about DISH and how it effects you. My GP is very supportive and took the time out to research DISH. Good luck and let us know how you get on

stickywicket

I'm sorry about your neck problems and hope the March appt will help. I can see that staying on the computer until your neck locks is probably not a good idea :roll: Good news about the omep. I couldn't do without it. Thanks for the update.

pauline23

Thanks for the reply and the encouragement. I'll let you know how I get on.