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Old 05-25-2010, 08:41 AM   #1
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Coping with Orbital Inflammatory Syndrome/Myositis and Prednisolone

Hiya,

Was wandering if there is anyone out there who has/had Orbital Myositis/Inflammatory syndrome? Was diagnosed in Feb 2010. Don't feel it is much of a diagnosis as doctors have no idea what is causing it only that it responds to steroid treatment. Managed to get down to 10mg from 60mg and then it all flared up again so was put back up to 60mg pred and Mycophenolate Mofetil (Cellcept). Have just come down to 15mg now and have had the twinges of another flare.

Fed up with the Predinisolone/Cellcept as well. Driving me crazy as have huge mood swings and hate having to constantly apologise to my hubby and colleagues who bear the brunt of it all. Difficult to explain to the 5 year olds I teach in the morning. After a morning teaching I am absolutely exhausted and start to feel very shaky (sometimes my hands start to shake). Used to be very active and manage a very full on job. Now can only bearly manage mornings and very active exercise causes me abnormal fatigue and shakiness. On a very healthy eating plan and doing some low key exercise, but still piling on the weight! Have had to adjust my whole life to cope with it all. Just want to be well and healthy again. A nice long mountain biking trip would be fab .

I also have flare ups just before my menstruation. Is that normal?

Any advice on how to minimize side effects/flare ups and speed up recovery process would be very welcome. Also if any one has some good information experience on/of my condition would love to hear.

Thanks

 
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Old 03-11-2011, 01:22 PM   #2
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Pauline C HB User
Re: Coping with Orbital Inflammatory Syndrome/Myositis and Prednisolone

Quote:
Originally Posted by sportie7 View Post
Hiya,

Was wandering if there is anyone out there who has/had Orbital Myositis/Inflammatory syndrome? Was diagnosed in Feb 2010. Don't feel it is much of a diagnosis as doctors have no idea what is causing it only that it responds to steroid treatment. Managed to get down to 10mg from 60mg and then it all flared up again so was put back up to 60mg pred and Mycophenolate Mofetil (Cellcept). Have just come down to 15mg now and have had the twinges of another flare.

Fed up with the Predinisolone/Cellcept as well. Driving me crazy as have huge mood swings and hate having to constantly apologise to my hubby and colleagues who bear the brunt of it all. Difficult to explain to the 5 year olds I teach in the morning. After a morning teaching I am absolutely exhausted and start to feel very shaky (sometimes my hands start to shake). Used to be very active and manage a very full on job. Now can only bearly manage mornings and very active exercise causes me abnormal fatigue and shakiness. On a very healthy eating plan and doing some low key exercise, but still piling on the weight! Have had to adjust my whole life to cope with it all. Just want to be well and healthy again. A nice long mountain biking trip would be fab .

I also have flare ups just before my menstruation. Is that normal?

Any advice on how to minimize side effects/flare ups and speed up recovery process would be very welcome. Also if any one has some good information experience on/of my condition would love to hear.

Thanks

 
Old 03-11-2011, 01:24 PM   #3
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Re: Coping with Orbital Inflammatory Syndrome/Myositis and Prednisolone

Hello Sporty 7

I am answering your message posted April 2010 (I have only just found this forum by chance)
I am English and have lived in France since 1979. I have suffered from Orbital Myositis, since September 1998, (although only diagnosed mid 1999 after suspicions of orbital cullulitis, metastases after breast cancer etc..) Over the past 12 years, I have suffered around 30 flare-ups of differing degrees, most of them on the right eye but several on the left, bringing on terrible pain, diplopia, chemosis (inflamtion of the conjunctive tissue) and massif facial swelling n(I looked like Quasimodo..) The worst were treated in hospital with 65mg prednizone, sometimes with intravenous mega doses (bolus) and have even had four treatments (each over three days) of intravenous hemoglobuline. They have tried me on Methorexate (chemotherapy) but, since it didn't stop the flare-ups, I refused to continue.

Nobody has ever found the cause, although after countless blood and genetic tests, the specialists think it may be linked to Rheumatoid Polyarthritis, although this is not confirmed...

I even weaned myself off prednizone two summers ago since I had tested that my body was still producing natural Cortisol. I stayed off it for over 3 months but was in such a state - weak, all my joints were swollen and some days I could hardly move - so I had to go back.
At the beginning, it would flare up when I reduced the dose. My level was 15mg/ for at least 4/5 years, under that it flared up (this they explained was that it had become cortico-dependant). I have now gradually weaned my dose down to 8mg/day but whenever I have the first twinges of a flare, I immediately hammer it with 2-3 days at 25mg. That usually does it. Occasionally though, it does get out of control and then it’s back to hospital.
However, the last time was nearly two years ago…

I go back to see my specialist from time-to-time but they have nothing new to tell me. I have a permanent prescription for prednizone and pet scans, in case of a major flare-up, so basically, I just handle the situation myself, hoping that one day they will be able to do something…

As for side-effects, I must admit that I am pretty lucky since I have been able to control my weight although, with the menopause, we all tend to put on weight so I am especially careful.
My Cholesterol level has gone up and my calcium down (I have osteoporosis but since taken treatment, this has stabilised and is now normal for my age, 60).

I don’t want to discourage you but, all I can say is that your body will finally get used to – and handle the steroids.

If you read this and want to contact me , please do (and anybody else suffering from O.M.)

Pauline C

 
Old 04-20-2011, 08:31 AM   #4
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bellabri287 HB User
Re: Coping with Orbital Inflammatory Syndrome/Myositis and Prednisolone

Hello I know it has been almost a year since you posted this, maybe you or the other poster will read this.

I have just been diagnosed with Orbital Myositis, and I have to say thank you for posting your story. I am waiting on blood tests for other autoimmune diseases but my Ophthalmologist is 99% sure this is Orbital Myositis. It makes me glad to know I am not completely alone in this disease, from what I can find, not much, it is rare. Good luck to you in your treatment!

 
Old 10-01-2011, 10:24 AM   #5
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Rfweiss HB User
Re: Coping with Orbital Inflammatory Syndrome/Myositis and Prednisolone

Quote:
Originally Posted by sportie7 View Post
Hiya,

Was wandering if there is anyone out there who has/had Orbital Myositis/Inflammatory syndrome? Was diagnosed in Feb 2010. Don't feel it is much of a diagnosis as doctors have no idea what is causing it only that it responds to steroid treatment. Managed to get down to 10mg from 60mg and then it all flared up again so was put back up to 60mg pred and Mycophenolate Mofetil (Cellcept). Have just come down to 15mg now and have had the twinges of another flare.

Fed up with the Predinisolone/Cellcept as well. Driving me crazy as have huge mood swings and hate having to constantly apologise to my hubby and colleagues who bear the brunt of it all. Difficult to explain to the 5 year olds I teach in the morning. After a morning teaching I am absolutely exhausted and start to feel very shaky (sometimes my hands start to shake). Used to be very active and manage a very full on job. Now can only bearly manage mornings and very active exercise causes me abnormal fatigue and shakiness. On a very healthy eating plan and doing some low key exercise, but still piling on the weight! Have had to adjust my whole life to cope with it all. Just want to be well and healthy again. A nice long mountain biking trip would be fab .

I also have flare ups just before my menstruation. Is that normal?

Any advice on how to minimize side effects/flare ups and speed up recovery process would be very welcome. Also if any one has some good information experience on/of my condition would love to hear.

Thanks
I was just diagnosed 6/26/11, similar experience that you have, I have an appointment to see a rheumotologist on Tuesday to start immune suppressant. Very interested in hearing how you are doing. Thanks.

 
Old 10-01-2011, 10:29 AM   #6
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Rfweiss HB User
Re: Coping with Orbital Inflammatory Syndrome/Myositis and Prednisolone

Quote:
Originally Posted by bellabri287 View Post
Hello I know it has been almost a year since you posted this, maybe you or the other poster will read this.

I have just been diagnosed with Orbital Myositis, and I have to say thank you for posting your story. I am waiting on blood tests for other autoimmune diseases but my Ophthalmologist is 99% sure this is Orbital Myositis. It makes me glad to know I am not completely alone in this disease, from what I can find, not much, it is rare. Good luck to you in your treatment!
I have also just been diagnosed. Just curious as to how you are responding to treatment. Originally I responded well than had a flare up, I'm on 80 mg of prednisone and waiting to see a rheumotologist to start immune suppressant therapy. Very interested in hearing how other s are fairing. Thanks.

 
Old 10-02-2011, 05:02 PM   #7
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sportie7 HB User
Re: Coping with Orbital Inflammatory Syndrome/Myositis and Prednisolone

So sorry to hear you have been diagnosed with Orbital Myositis.

The bad news was that after my initial flare I had a few other flares - one landing me in hospital for 7 days (May 2010) as they could not control it with the oral meds. Put me on a mega dose intavenously which helped for a while and then it just got worse.

The good news is I have now been symptom free (not even the hint of a flare) for over a year and am back at work full time (gradually worked my way back from part time). I am off the cellcept and weaned myself down to 5mg pred before having to go back up to 7.5mg when I got pregnant (have had to stay on pred a little longer as am pregnant and rheumatologist wants to keep me on until I have given birth).The lower doses of pred seem a lot easier to handle - hardly feel like I am on them. Hope to be completely off by mid of next year.

Pray you will soon be symptom free.

 
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Old 10-03-2011, 08:22 AM   #8
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bellabri287 HB User
Re: Coping with Orbital Inflammatory Syndrome/Myositis and Prednisolone

Hello Rfweiss,

I am so sorry you have diagnosed with this awfully under-reasearched disease. I hope you can get your symptoms under control, tell your immune system to back off!

I am so very lucky, I never went on predinsone, though it would have been the easiest thing to do. I 'had fun' for months on 800mg of ibuprofin 4-5xday, the outer swelling went away after only a couple weeks, it took months for my eye motility finally come back and the pain to go away. I went back to work only 1 week after the outer swelling was gone, but my eye motility was still painful and limited, that's what nobody sees. We can look completely fine on the outside but looking in any direction causes insane amounts of pain.

I have not had a flare since my 2 in February (1 month) and April (3 months) of this year. I do still feel pain in my eyes when I have allergies and I rub them (BAD ME!) or under crazy stress. I had eye pain a couple days before my wedding because of the stress I believe. Any twinge of 'that kind of' eye pain sends me back to the ibuprofin hoping I will knock back a potential flare if one is coming. Next time I flare my neuro-opthalmologist (the doctor who specializes in treating this and confirmed it) will get me on high dose prednisone.

I will be honest, seeing a rheumatologist did not help me at all. Mine didn't know what this disease was or why I was seeing her for it. My PCP though I had a secondary autoimmune disease (Lupus) that was causing the orbital myositis, I don't and the Rheumy confirmed that. Is your rheumatologist only to start the immune suppressive treatment, not to treat the orbital myositis? Who diagnosed and is treating the orbital myositis?

I will be sending you good thoughts!

 
Old 10-03-2011, 08:42 AM   #9
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bellabri287 HB User
Re: Coping with Orbital Inflammatory Syndrome/Myositis and Prednisolone

Hello Sprotie7,

Congratulations on being with child! Congratulations on being flare free for over a year! That is my ultimate dream, to be a mom, my husband and I will begin trying next summer. It is a huge fear of mine that if I flare between now and then, I will have to go on the prednisone and that it will ruin my chances of being pregnant. I am happy to hear someone else with this disease is able to have a child and be on presdnisone to control the symptoms as well as not flare!

Nothing but good thoughts for you and your baby!

 
Old 10-25-2012, 02:00 PM   #10
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Re: Coping with Orbital Inflammatory Syndrome/Myositis and Prednisolone

I was diagnosed back in May with an orbital pseudotumor. My doctor started me out on 120mg a day of prednisone and i have been gradually trying to reduced the dosage. I am now on 40mg of prednisone and have had (5) steroid infusions of 1G each back in june bringing my total dosage of the pred so far to 14700mg. I am also taking 15mg of methotrexate once a week, but nothing seems to be helping. I recently went to a rheumatologist who did a bunch of blood work looking for the cause of this and got no answers, other than my liver levels aren't good and i have a positive rheumatoid factor of 33....The doctors now want to take me off of the methotrexate and replace that with cellcept. My neurologist is also suggesting IVIG infusions, but my insurance company is denying them saying there isn't any information supporting that it will help my condition. I am just getting frustrated because I want to be off of the steroids, I have had every side effect from them (moon face, stretch marks, weight gain, rash, etc...) but every time i drop my dosage down my eye tends to revert back. I am now dealing with the constant every day pain and the white of my eye is now starting to get large again. I guess i'm just wondering if anyone has had any luck with IVIG infusions and/or cellcept when dealing with this condition. Any advice/words of encouragement would be appreciated.

 
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