Hi, I am a doctor who has just been diagnosed with PR and I would just like to congratulate you for an excellent website



A***** C*****

C***** d*****

UK
 

Many Thanks,

N**** Y****

Karin, Our Benefits Expert is dealing with this email.

Making a donation to the IPRS is easy and safe with Paypal, all you need is a debit or credit card and follow the Paypal instructions. (You don't even need to join Paypal, to make a one off payment . The IPRS incurs the charges out of the donation so it doesn't cost you anymore for making the donation. Thank you for any Donations made.

Thank you.

Mrs. C*****

Thanks,

L***

Firstly, I would like to say how happy I was to have found your site. I was diagnosed with PR in February of this year while being treated for what had been previously diagnosed as frozen shoulder. I thought I was suffering with various different joint problems over many years, from my ankle to my wrists and shoulders, but of course now realise it was PR. I have started a diary of how often PR strikes together with marks out of ten as to its severity, my diet at the time etc etc. if this type of knowledge is of any use to anyone who should contact your site, then I would be very happy to send it to them. I have added some photos which again you have my permission use should you want to. (You can see the photos under Deborah's Story)

Thank you again for your site,

Deborah

H************

England

Thank a lot

R****** C****
 

Dear PR society,

I have been recently diagnosed with PR and have no one to talk to about it. I recently found your page so I am writing.

I have been at my wits end with these symptoms for years and now have just started to work with A rheumatologist.I could just use some support with this. A lot of my friends think I am crazy, because I don't look sick all the time. But the pain is constant and I haven't yet found anything to help with it yet.

Thanks,

Angie

Hello,

My name is S**** B*** l. I am a 46 year old male with PRA. This disease is the pits and I would like to be able to promote awareness of this thing. How can I assist in spreading the word here in Australia?

People need to know how this impacts on ones ability to lead a normal fulfilling pain free life. The more employers and Governments know about this the better the understanding of what sufferers have to live with. With a greater empathy people may become more tolerant of this disease and towards sufferers. 

In fact the general medical profession is mostly in the dark over PRA, except for specialist Rheumatologists. Education is the key so once again please help me to help my fellow sufferers here in Australia. 

Cheers

S**** B***

Hello,

My husband was diagonsed with RA in Dec of 07.  He is currently seeing a RA specialist.  One day he had such a horrible flare up in his knee he had to go to the Dr's and have the fluid drained from it.  They were able to at that time tell him that he had PR. They have changed his meds twice.  They are trying to figure out what works best for him by narrowing it down. He is currently taking Sulfazine.  He has had more episodes to date than normal. 

It seems like the episodes come much more frequently.  Almost everyday it's crippling and just frustrating to watch my husband in such agony.  I read somewhere that Mangosteen ( a natural blend of juices) is known to be helpful.  Are you familiar with this juice?

My frustration is with the RA specialist.  He seems so laid back about my husband's condition.  The Dr tells him well we can try this drug see how it works.  If it doesn't work then he was told that the Dr will continue to go thru the list of them.  Then he will schedule my husband to been seen again in 2-4 months.  It doesn't seem to matter that the flare up's are so painful and are happened more frequently than ever.  It's seems to be everyday the PR ends up in a different part of my husbands body. 

Is there a different route to travel?  Is there a specialist that anyone can recommend?  I feel like we are wasting time. 

Thank you in advance for your time. 

Sincerely, 

S**** *. G*******

hi

im sorry to bother you ,,,ive just been diagnosed with palindromic rheumatism and after reading the information on your site i now know im not the only one suffering in agony all the time .mine started as a child and remained in my neck going stiff and locking into one position and 3 years ago it started in my wrists about once a month then twice a month untill now i get it all over my body ,,my hips,feet,ankles and wrists are the most affected ,ive been on lots of diffrent anti inflamitories and none help me at all ,im now on naproxen at 500 mg twice a day and starting a new drug after councilling in feb next year as there is lots of side affects ,,,i was lucky in one way becouse my wrist was badly swollen when i seen the specialist and after an hour of examination and loads of questions they diagnosed me ,i hadent even herd of this desiese ,,everyone thought i was just getting lazy and thats depressing on its own with out all the constant pain im in .how many people in the uk have this do you know ?
anyways thanks for lisening as no one else understands what i go through every single day and with a baby of 14 months and on my own i find it very very tiring and depressing .
 

mrs h***

Hello 

I wonder if there is any known awareness of a link between PR with DVT?

Thanks

T***** C*****

I have just discovered your website and am relieved that I am not going crazy.  I am too ill and in too much pain to go into details at the moment but whilst I am enduring this latest cruel bout of PR I know that I am not alone.  I can endure the pain, the isolation, the depression, the disability etc. etc. but I cannot endure the complete lack of compassion and understanding I get from my husband and son.  They consider that this "illness" is a nuisance and really puts them out because "who is doing the washing, cooking, cleaning, bookwork for our business and working at our restaurant while I am lying in hobbling around the house or just lying in bed waiting for PR to just go away.  Their attitude is 1,000 fold more depressing than any physical pain that I can endure.  I find that I try to hide my attacks from them because I can't bear their disdain.

I look forward to joining the forum in the next few days (when PR passes again).  I would like to know whether anyone else out there has the same problem with family and how they cope with it.

I have tried to join forum but have yet to receive email instructions. 

Regards 

S**** D*****.

I couldn't believe there was a name for what I have. 3 years ago I went to a specialist on Rheumatoid arthritis. I had the aches and pains in my joints for years, off and on. Started out a year apart. Now it's been going through a lot in the last 2 years. I was amazed that my Dr. figured it out. It's been 6 months now and my medication is not working. I see him on the 18th of October but will call him tomorrow to see if I can get in sooner.

Hope to hear back from you, 

J****

Hello,

I was diagnosed with Palindromic Rheumatism a couple of years ago.  I can relate to everything on your website right down to every picture.  I had no idea what was happening to me the pain was incredible and the swelling and redness was unbelievable, I went to my Family Doctor who then sent me to a Specialist.  He diagnosed me quite quickly and prescribed Plaquenil I take two pills aday.  My life has changed I have the occasional day where I might feel some joint pain, but nothing compared to what I was going through.  Please let me know if any of you have tried Plaquenil, it is apparently not a good drug to be on.  It could cause blindness, I have to go to a Specialst a Retina Imaging Centre to check my eyes once a year to ensure that this drug is not damaging my eyes.  The pill takes approximately a month to really notice a difference, but my life has changed thanks to Plaquenil. 

Please let me know if their is another drug as effective, and let me know if people you know are taking Plaquenil.

Sincerely,

C**** F******

d****

Hello!
I was diagnosed  seven years ago as having palindromic rheumatism (PR). 
Since then, the frequency of swellings has increased.  There is no sign
of RA.  Plequenil was ineffective.  I have read that colchicine is
sometimes used as a treatment for PR.  However, none of the three
rheumatologists I've seen even mentioned colchicine, which I know is
normally used for gout--which I do not have.  Do you know PR patients or physicians who are experienced with the use of colchicine? 

Thanks.

N***** *. D**

I have had PR for 46 years but was only diagnosed 2 years ago. Bee venon taken orally seems to nearly stop bad attacks.

I plan to contribute what I can to your site.

D***** L******  A***** US

I am 52 years old and was just diagnosed with Palindromic Rheumatism.  I would line to know if there are any foods I should stay away from or any foods I should be consuming.  Also, I would like to know if exercise helps increase or decrease my pain level during an episode. 

Thanks

Hi,
 
I was diagnosed with PR about 4 years ago.  I have no joint damage.  My ESR is usually in the 80s, and rheumatoid factor values range from the 600s-900s.  My flares can last for days and weeks.  It seems as though it has to take a course around my body (fingers, hands, wrists, knees, feet, toes, and hips) before it leaves.  Even when the flares clear, I still have a low-grade type of pain that never goes away.  My rheumatologist thinks I also have fibromyalgia. 
 
Right now, my rheumatologist has me on Voltaren and Plaquenil, and this doesn't seem to help at all.  Once in a while, I'll take prednisone, but the weight gain is awful.  My rheumatologist has suggested that I try Enbrel, but I'm scared of the lymphoma side effect.  I know this is rare, but I do know someone who developed lymphoma while on Enbrel.  What do you think about this medication?  I've also heard of a medication called Lyrica.  Any medication input you can give me is greatly appreciated!

V****

Hey,

I am so glad I have finally found your site. My name is J**** M******** I am a 27 year old Financial Advisor in M**** who has been suffering from PR for the last 7 years and have finally had it diagnosed properly in the last 3 months. I have been on a heavy diet of Vicodin, and Indomecethin (SP) and have finally been put on a steady dose of plaquenil (hydroxychloroquine) and it has seemed to reduce my frequency of attacks, it’s a 2 a day dose very easy to take. I am still unable to eat shellfish (being from M**** is very hard to eliminate) and most beer. However, I can have a glass or two of wine and a mixed drink again. This problem as my rheumatology Dr. in P******* mentioned is such an unknown disease that effects a number but a very limited number of people. I was diagnosed with Gout for 3 years and for the first 4 years they just called it a sprained ankle. When the attacks happen I am unable to work, unable to walk and only able to get around on crutches. I am 5’9” 210 lbs a bit overweight but I have no family history of any type of disease. I am so glad that I have found more people who are suffering in the pain as I am. My symptoms last approximately 3-5 days, and are a nightmare. Is there any information I can provide to you that would be beneficial. I have been looking for this site for a long time.


J**** M********

Hi,

I wondered if I could contact Karin regarding benefits as my Husband has been diagnosed with PR and I wondered if there were any benefits available to him?

He is in full time work as a Postman but obviously when the PR kicks in it makes it impossible for him to work as it is centred mainly in his knees and ankles.

I would be grateful for any information that you can give me.

Yours sincerely,

J*** C*****.

Thanks for a very interesting page on this disease. Could you advise me where the podcast is from because it was also interesting and I would like to subscribe.

Thanks,

N***

Dr N*** I*****
GP Registrar
 

I was advised today that I have symptoms of PR. I have been struggling with this problem since Jan 3, 2005, it Began during a trip to the hospital with double pneumonia for intravenous antibiotics.

The intravenous antibiotic (zosyn with piperacillin) leaked outside of my vein and under my skin causing a golf ball Sized medicine blister, this was allowed to disperse under my skin and saturated the tissues underneath.

Three days later I went into something similar to the uncontrollable movements as depicted in the movie Exorcist.

Your pictures look all so familiar.

I read the volunteers bio’s and see hospital visits prevailed in the onset of PR. Example pregnacies!!!!

I was curious if anyone else had IV infiltration prior to the beginning of their living nightmare.

I couldn’t work 7 months after my trip to the hospital so I had plenty of time to research, I am totally amazed The number of Rheumatologists and web research I have not came across this website.

I am attaching a few pictures I have taken in the last 2 ½ years.

I was prescribed a low dose of prednisone and plaqueril (used to offset the side effects of the prednisone) I also take 375mg of Naproxen as a daily deterrent.

May God bless you for starting this website, this gives me hope I haven’t had in a long time.

Thanks M***

Just a few pics I have plenty it’s sad to say. Please reply. I will try to get in your forum I have some questions for people suffering as I.

Please reply to let me know you received this email.
 

Thank you very much! I was diagnosed 4 years ago and I FINALLY understand what PR is. Thank you! Thank you! Thank you!

B G******

 

hi my name is n** im so glad that i found this web site i have felt i was the only one on earth with this ..... i thougth my doc was crazy i felt so depressed cause i did not understand this untill now..i was really sick with the flu off work 2 weeks i could not walk even or pick my head up... and there it was full blown pr....thanks for the info..

Hi

I've found the IPRS site and the forum very helpful and don't feel I'm crazy with my invisible pains anymore.

I would really like to join the forum but not sure what to do next to register.

Hope you can help

Bye for now

S****

I have just found your BRILLIANT web site, everything you have written about regards symptoms and feelings I have experienced, even to the point of pleading with my doctor to refer me to a psycologist as I didn't know what was happening to me.
I am a "fifty-something" married mother of two grown up sons, who never had any serious illness until my PR came along, then I thought I was dying!!!!!
Now I've read your web-site I actually laughed because I no longer feel like I'm a malingerer.
If only the people I work with could read all you have written on the subject they would understand what it is I have. ( They can't see it, so it can't exist)
I will go to bed and sleep well tonight knowing I'm not alone should my joints play up ......although I had a good flare up last Thursday and don't expect one this week!!
THANK YOU THANK YOU for writing all about ME
M******** J***
 

I have symptoms that may be palindromic rheumatism but how can I know? What tests should I ask my doctor for? The only joints that are swollen are my knees and there is no redness or warmth. Are those knock-out factors?
C****** C***
 

Hello

I am female, 39 years young and single with two children.

Three years ago, I was diagnosed with fibromyalgia, but that only really affected my muscles and ligaments, but now my joints are involved.

I have been suffering on and off with pain in my joints, ramdom rashes and swelling with minor rashes on my hands for quite a while now (2 months). One minute i am in pain with swellings and rashes, next minute the rashes and swellings have subsided. I am still in pain however.

I am nowwhere near as strong as i used to be. I was once able to get a double bed down stairs, out into the garden shed. Now, i my arm shakes just holding a full kettle of water. I can only assume that this is due to the pain in my shoulders, wrists and hands.

I have just given my fourth blood sample (yesterday) and to date, absolutely nothing is conclusive.

Every time i have been to the doctors regarding the swelling/rashes, there has been no evidence of them at all. I am sure they think that it is all in my head as I have currently been perscribed anti-depressants, this was the first time i went to the GP about it. On my 4th visit to the GP i was prescribed Naproxen, this has played a minor difference, but still the pain persists, the rashes and swellings come and go as they please.

I am desparate to have my ailment diagnosed so I can finally put a name to what I am feeling and hopefully this obliterate my depression. Not knowing is a 1000 times worse I feel.

Many thanks for reading this email and I truly hope to hear from you at your earliest convenience.

Yours faithfully

J**** K***
 

Thank you for having a website. I finally , after 4 years found a Doctor that found out what I have. I will find out more on you website and will probably mail you back soon. J**** from E*** h*****, WI
 

Hello,

I am not sure if you have had anyone mention natural remedies but I tried it and it worked.

I was diagnosed with PR over a year ago and was put on all these medicines and given a very sad outcome. I had been having symptoms for 4 years before I was finally diagnosed.

Any way. I decided that there was no way at the age of 26 my live would be like this. So I went to a Natural wellness center that does mainly chiropractic work but he helped me to get off ALL the meds I was on, including birth control and antidepressants. I have been seeing him 2 times a week for 11 months and have had no symptoms! I had some pain and slight swelling one day and went to see him and the swelling went down instantly and the pain was gone. I have had NOTHING since. I am slowly getting onto a less frequent schedule of seeing him and hope to be down to once a month by the end of the year. Since I started seeing him I have changed my diet as well to include 75% organic/natural foods. I have also noticed that other issues that I had, like asthma, have also been significantly reduced.

I hope this brings hope to you and to others in our position! Good luck!

J****** K**

I've recently been diagnosed with PR. It is thought that my pregnancy triggered it. My question is regarding the risks of another pregnancy. Do you hear from many women who developed PR after pregnancy, and then went on to another pregnancy? I'm interested in how they felt after the next pregnancy...did they feel like their symptoms were the same, better, or worse? My doctor says pregnancy will not make the PR worse, but I am concerned.
I would apprectiate any info you have regarding this topic, since there doesn't seem to be much info available.
Thank you so much!
L***** K*****

Thank you for your response, and I will join the forum as you've suggested. It seems as if your website is about the most informative I've run across so far. ..THANK YOU!!!
L*****

Hello,

My name is T*** F***** and I have been diagnosed with PR. The only thing that seems to control the swelling and pain is predisone. They Dr's are trying to get me to go on a long term dose of Methyltrexate.....which I am not doing. I am otherwise a very physically fit person of 35 years of age who hikes and windsurfs. This condition is wearing me and my family down. I have had the condition for 8 months now and have gone through umpteen tests all showing that I am fine. I am happy to find your site as I feel very alone with this horrible condition and the Dr's just seem not to believe me!

T*** *. F*****
Retail Store Supervisor

Hello, My husband is suffering from Palindromic Rheumatism. He is currently going through an episode of frequent attacks in various joints. Is there a newsletter that you can send him or articles to inform him. I’m thinking it may help him get through this. He has been an electrician for 40 years and hates when this affects his work.
W****** N***
M*******,

Hello, My husband is suffering from Palindromic Rheumatism. He is currently going through an episode of frequent attacks in various joints. Is there a newsletter that you can send him or articles to inform him. I’m thinking it may help him get through this. He has been an electrician for 40 years and hates when this affects his work.
M* N***
M*******

Hi,

My name is R****** I am 43 and I have had joint problems for about 15 years. They are very sporadic but when they attack it usually takes me out for weeks. My last one was mid January and I was off work for about five weeks in total. The Dr at my practice finally referred me to the Rheumatology Department and I went there today and the Dr says that I have PR. After all of this time it is quite a relief to have a name put to the pain which I used to describe as like having chronic toothache in your knee.

Unfortunately due to the amount of time taken from work (I work for Royal Mail, I am a Postman) this triggered the official warning procedure and much to my disgust even though I had Drs notes etc my line manager proceeded to give me a first stage warning. He said that this would hopefully get something medically sorted about it but I can't see where he was coming from on that one. Unfortunately in this warning system I have no chance to appeal.

After talking to the Dr and finding your very informative web site it is nice to know that it is not just me and I totally sympathise with any other sufferer.

Best wishes,

R****** C*****

I think I might have this Palindromic Rheumatism.

I have been having weird symptoms since August 2006. It started in one finger (left forefinger) and then traveled to other joints. Sometimes my muscles are crampy. Often my tendons are inflammed (particularly thumbs, wrists, medial epicondyle, fingers). A flare up will usually be very strong for a few days and then taper off over the next two weeks. When I am having a flare up, I will typically have a low grade fever in the first few days and feel "sickly." The pain can be crippling. But sometimes the pain is controllable with Tylenol.

The affected joints will typically be swollen and stiff but there is not much redness. Usually it is my MCP and PIP joints, wrists, my left ankle, and my 1st MTP joints in my feet. Sometimes I have symptoms in my knees, shoulders, elbows and my left TMJ. A few months ago, my TMJ was in unbearable pain. Now it is usually fine but clicks and pops a lot.

Depression always accompanies the pain as I usually feel crippled and am afraid that "this time it might stay." It always leaves though. Then I feel like "maybe it won't come back." But then it does. I have had 4 or 5 flare ups since August. Usually about every 4-6 weeks. My last one started on Feb. 16 and ended Feb 28. My first rheumatologist appt was March 1. She could not observe anything since I was mostly fine. That's my luck. I have been fine since except for minor discomfort that typically won't last more than an hour or so.

All my blood tests have been negative. A hand x-ray revealed no joint damage. As far as the doctors know, I am a hypochondriac. However, I have been diagnosed with "possible rheumatoid arthritis" since the symptoms are kind of there and kind of not.

I have scoured the internet trying to figure this thing out. Your website intrigues me.

Thanks for putting the information out there.

C****** M********
B**** V****, A*******, USA
 

REPLY

Thanks. I saw the pictures on your website and my joints have never looked like any of those. It is possible I just have RA that has not graduated to the everyday thing yet. I will start keeping a diary as you have suggested and will take pictures of the swelling since my doctors keep missing it (I do not have swelling and redness like the photos on your website. I feel terrible for those people).

You don't have to write back again. I appreciate that you already did and I assume you get a lot of e-mails.

Have a great day!!

Hello
Thank you for having a website. I finally , after 4 years found a Doctor that found out what I have. I will find out more on you website and will probably mail you back soon.

J**** from E** H*****, WI

Hello,

I am not sure if you have had anyone mention natural remedies but I tried it and it worked.

I was diagnosed with PR over a year ago and was put on all these medicines and given a very sad outcome. I had been having symptoms for 4 years before I was finally diagnosed.

Any way. I decided that there was no way at the age of 26 my live would be like this. So I went to a Natural wellness center that does mainly chiropractic work but he helped me to get off ALL the meds I was on, including birth control and antidepressants. I have been seeing him 2 times a week for 11 months and have had no symptoms! I had some pain and slight swelling one day and went to see him and the swelling went down instantly and the pain was gone. I have had NOTHING since. I am slowly getting onto a less frequent schedule of seeing him and hope to be down to once a month by the end of the year. Since I started seeing him I have changed my diet as well to include 75% organic/natural foods. I have also noticed that other issues that I had, like asthma, have also been significantly reduced.

I hope this brings hope to you and to others in our position! Good luck!

J****** K**

I've recently been diagnosed with PR.  It is thought that my pregnancy triggered it.  My question is regarding the risks of another pregnancy.  Do you hear from many women who developed PR after pregnancy, and then went on to another pregnancy?  I'm interested in how they felt after the next pregnancy...did they feel like their symptoms were the same, better, or worse?  My doctor says pregnancy will not make the PR worse, but I am concerned. 
I would appreciate any info you have regarding this topic, since there doesn't seem to be much info available. 
Thank you so much!
 

L***** K*****

REPLY

Thank you for your response, and I will join the forum as you've suggested.  It seems as if your website is about the most informative I've run across so far. ..THANK YOU!!!
L*****

Hello,

My name is T*** F*****  and I have been diagnosed with PR.  The only thing that seems to control the swelling and pain is predisone.  They Dr's are trying to get me to go on a long term dose of Methyltrexate.....which I am not doing.  I am otherwise a very physically fit person of 35 years of age who hikes and windsurfs.  This condition is wearing me and my family down.  I have had the condition for 8 months now and have gone through umpteen tests all showing that I am fine.  I am happy to find your site as I feel very alone with this horrible condition and the Dr's just seem not to believe me!  

T*** *. F*****

Goodmorning, I am a dutch woman seeking for help.
I found your website a few days ago and it was a blessing!
my appologies for my English writing.
I believe my 16 year old daughter suffers from Pr.
she started having pain since she was 8 years of age.
We have seen about 10 doctors since and no one knows what she has..
everytime she has to go to the doctor the pain seems to fade.
Now I have read your site things fall in places, it is completely her story.
I do have a question, how can we make the doctors in The Netherlands aware of this disease?
The Doc she is seeing now never ever heard of it! and he is an immunologist.
The problems are affecting her life very much, she can't write or learn at the moment, but sometimes it is only a few hours and sometimes it lasts a week.

Do you have any tips for us, I can't force the doctor to read this site, if I read the Dutch site on this topic the information is very little.
she suffers from shoulder pain, vinger, hip, feet, jaw, earshell, toe, back etc.etc. actually every join in her body. even on places you'd never expect a join!

This is the first time in 8 years we recocnize EVERYTHING..
She is not strange, weird or different, it has a name..

Please help us to get a diagnose or to make the Dutch Doctors and reumatologist aware.

Thanks for reading this, it is a cry for help.

tips are more than welcome.
very kind regards,
J**** K*****
 

REPLY

Thank you Paul, I'm sorry about your hands!
do you mean the symptoms leaflet?
I will do that!
I also will spread the word, it is bad no one in Holland know about it. even in the best hospital the doc. never heard of it!!
The forum is fantastic, please keep up the good work.
it is really a blessing to know that you are not the only one.
does that 16 year old child read the forum too?
I am very curious about that story.
thanks again and if I can do anything in Holland just let me know ;-)

best regards,
J****