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(from 2006) IVIg and Post-Polio Syndrome

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Dolphin, Sep 24, 2009.

  1. Dolphin

    Dolphin Senior Member

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    I happened to come across this during the summer. (I have a letter in press for the journal and was looking at the length of other letters that were published and how many references they'd used). Some researchers/clinicians have had some success with IVIg in ME/CFS patients e.g. Dr Kerr with three patients who had parvovirus B19-associated CFS http://www.cfsrf.com/pdf/ivig.pdf .

    =====

    Full free text at:
    http://jrm.medicaljournals.se/article/pdf/10.1080/16501970500441625

    Effect of intravenous immunoglobulin in patients with post-polio syndrome -- an uncontrolled pilot study.

    J Rehabil Med. 2006 Mar;38(2):138-40.

    Kaponides G, Gonzalez H, Olsson T, Borg K.

    Department of Public Health Sciences, Division of Rehabilitation Medicine, Stockholm, Sweden. georgios.kaponides@ds.se

    OBJECTIVE: To analyse changes in muscle strength, physical performance and quality of life during intravenous immunoglobulin (IVIg) treatment in patients with post-polio syndrome.

    DESIGN: Open clinical trial. Patients: A total of 14 patients (6 women, 8 men; mean age 57 years, range 43-67 years) were included in the study.

    INTERVENTION: Treatment with 90 g IVIg (30 g daily for 3 days).Main outcome: Muscle strength, measured with dynamic dynamometry, muscle function, by means of performing the 6-minute walk test, and quality of life, analysed by means of the SF-36 questionnaire, were performed before and after treatment.

    RESULTS: For quality of life there was a statistically significant improvement for all but one of the 8 multi-item scales of SF-36 when comparing data before and after treatment with IVIg. The multi-item scale most improved was Vitality. There was no significant increase in muscle strength and physical performance.

    CONCLUSION: Data indicate that IVIg may have a clinically relevant effect, with an improvement in quality of life. The effect may be due to a decrease in an inflammatory process in the central nervous system, which earlier has been reported in patients with past-polio syndrome after IVIg treatment. Since a possible placebo effect cannot be ruled out, a randomized controlled study is needed.

    PMID: 16546773 [PubMed - indexed for MEDLINE]



    ==Just found this==

    Intravenous immunoglobulin for post-polio syndrome: a randomised controlled trial.

    Gonzalez H, Sunnerhagen KS, Sjberg I, Kaponides G, Olsson T, Borg K.

    Lancet Neurol. 2006 Jun;5(6):493-500.

    Division of Rehabilitation Medicine, Department of Clinical Sciences, Danderyd Hospital, Stockholm, Sweden. henrik.gonzales@telia.com


    BACKGROUND: Survivors of poliomyelitis often develop increased or new symptoms decades after the acute infection, known as post-polio syndrome. Production of proinflammatory cytokines within the CNS indicates an underlying inflammatory process, accessible for immunomodulatory treatment. We did a multicentre, randomised, double-blind, placebo-controlled study of intravenous immunoglobulin in post-polio syndrome.

    METHODS: 142 patients at four university clinics were randomly assigned infusion of either 90 g in total of intravenous immunoglobulin (n=73) or placebo (n=69) during 3 consecutive days, repeated after 3 months. Seven patients were withdrawn from the study. Thus, 135 patients were assessed per protocol. Primary endpoints were muscle strength in a selected study muscle and quality of life as measured with the SF-36 questionnaire (SF-36 PCS). Secondary endpoints were 6-minute walk test (6MWT), timed up and go (TUG), muscle strength in muscles not chosen as the study muscle, physical activity scale of the elderly (PASE), visual analogue scale (VAS) for pain, multidimensional fatigue inventory (MFI-20), balance, and sleep quality. Outcome tests were done immediately before the first infusion and 3 months after the second infusion. This study is registered with , number NCT00160082.

    FINDINGS: Compared with baseline, median muscle strength differed by 8.3% between patients receiving intravenous immunoglobulin and placebo, in favour of the treatment group (p=0.029). SF-36 PCS did not differ significantly between the groups after treatment (p=0.321). Differences in the subscale vitality score (p=0.042) and PASE (p=0.018) favoured the active treatment group. MFI-20, TUG, muscle strength in the muscles not chosen as the study muscle, 6MWT, balance, and sleep quality did not differ between groups. For the whole study population there was no significant change in pain, as determined by VAS. Nevertheless, patients who reported pain at the study start improved in the intervention group but not in the placebo group (p=0.037). Intravenous immunoglobulin was well tolerated.

    INTERPRETATION: Intravenous immunoglobulin could be a supportive treatment option for subgroups of patients with post-polio syndrome. Further studies on responding subgroups, long-term effects, and dosing schedules are needed.
  2. sarahg

    sarahg Admin Assistant

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    Pennsylvania
    I can tell you that with intramuscular immune globulin therapy, my brain is working much better, I am more aware of my surroundings and can communicate better and I have slightly more endurance. Lymph nodes are still huge and sore, though less so. Has not done anything about pain, sleep or much else though. The bad news is, there is now a huge shortage of most of these products across the country. There is just not enough plasma to manufacture them. Aside from begging and pleading everyone I know to donate plasma not much can be done about it. I just had what will probably be my last shot for an undetermined time period yesterday. So if I drop off the face of the earth in about 2-3 weeks that will be why! This therapy really has helped more than ANYTHING I have tried over the course of my entire illness and I am slowly coming to grips with the fact it will be lost to me. Thank you for posting this study, I have viral onset ME/CFS and no polio, but it is still interesting to see. I notice it does not look like they did measures of cognitive function in this study, and that is what has been most improved for me. I have EBV, parvovirus b-19 and HHV-6 reactivations. I have the highest HHV-6 level my specialist ( and several other dr's he has shown it to) has ever seen- they have no clue how I am doing as well as I am! (admittedly not that great) even before the IMIG therapy, I can walk short distances, sit and look normal, and sometimes make intelligent thoughts, they were all shocked by how high it was and said most people with levels even lower are bed and wheelchair bound. Sadly I have developed allergies or bad reactions to every antiviral they have tried so it makes it even more of a bummer that I am currently loosing this treatment. I am curious to hear from other people who have tried it and how it worked for you!
  3. jenbooks

    jenbooks Guest

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    I get IVIG. Gamunex makes bottles as little as one gram (since it's $100/gram) and also 2.5 grams. It lasts about 3 weeks--can you switch to that? It's IV not IM.

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