gh intravenous immunoglobulin: Has anyone heard... - PMRGCAuk

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gh intravenous immunoglobulin

jwb43 profile image
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Has anyone heard of using intravenous immunoglobulin treatments for PMR? They say it's a great treatment for autoimmune conditions.

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jwb43
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9 Replies

The only time I had to have intravenous immunoglobulin was in 1997 when I was struck with a condition called Guillan-Barre Syndrome which put me out of action for 3 months. I was in hospital for two weeks before coming home with a wheelchair and other helpful aid. This was another auto immune disease that came from know-where but very frightening and debilitating. But I came through it thankfully. Now here I am with PMR another similar thing that just came on practically overnight and the cause not known. I don't know whether the Immunoglobulin has been suggested to you but maybe a bit drastic when Pred seems to work. Good luck

PMRpro profile image
PMRproAmbassador

IViG is used for certain a/i diseases but not of the PMR sort - originally for conditions where the immune system damages antibodies that create our immune defence. It is beginning to be used for other a/i diseases, mainly very serious ones:

"The clinical specialities using the largest amounts of IVIG are neurology, haematology, immunology, nephrology, rheumatology and dermatology. IVIG has had a major impact on the treatment of neurological disorders including dermatomyositis, Guillain–Barre syndrome, chronic inflammatory demyelinating polyneuropathy (CIDP), multifocal motor neuropathy (MMN), myasthenia gravis and stiff person syndrome. In haematology it is used to treat immune cytopenias, parvovirus B19 associated red cell aplasia, hypogammaglobulinaemia secondary to myeloma and chronic lymphatic leukaemia and post-bone marrow transplantation. In immunology IVIG is used in the treatment of primary antibody deficiency (PAD), in nephrology, rheumatology and ophthalmology it has been used to treat vasculitis, systemic lupus erythematosis (SLE), mucous membrane pemphigoid and uveitis and in dermatology it is used most commonly to treat Kawasaki syndrome, dermatomyositis, toxic epidermal necrolysis and the blistering diseases."

But

"Intravenous immunoglobulin (IVIG) is a blood product prepared from the serum of between 1000 and 15 000 donors per batch. It is the treatment of choice for patients with antibody deficiencies. "

so is very expensive to produce and use.

piglette profile image
piglette

Who has suggested you should have this treatment? It seems rather overkill as pred is such a good way of treating symptoms.

jwb43 profile image
jwb43 in reply to piglette

No one has suggested it but I am unable to take prednisone because of severe side effects. I was just looking into other options online and saw that this was sometimes used for autoimmune conditions.

piglette profile image
piglette in reply to jwb43

What has been suggested? There are other options that can be taken.

jwb43 profile image
jwb43 in reply to piglette

I have tried Methotrexate it did not help. Now I'm trying something called Hydro Quinlan or something like that. They're all part of those dmdr medication. Over the four years I've tried dozens and dozens of different treatments period like low dose Naltrexone just made my pain worse. You name it I've tried it. So my doctors are just grasping at straws now. Unfortunately I'm one of those people that has a very sensitive system to side effects of any kind of medications.

PMRpro profile image
PMRproAmbassador in reply to jwb43

Hydroxychloroquine

HeronNS profile image
HeronNS

Have a look at this old thread on Patient:

patient.info/forums/discuss...

Another possible alternative to pred. It, too, has side effects, but as it's a different med your body might tolerate it better.

jwb43 profile image
jwb43 in reply to HeronNS

Thanks very informative.

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