Tukea ja tietoa Myasthenia gravis -sairaudesta

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Sivumme toimivat yhdyssiteenä myasthenia gravis -, CMS ja LEMS -sairautta potevien, heidän omaisensa ja hoitajiensa välillä. Pyrimme antamaan ajantasaisia tietoja hoitomahdollisuuksista, opastusta arjen ongelmista selviämiseen ja tietoa yhdistyksen tapahtumista.

Toivotamme uudet tukijamme ja jäsenet tervetulleiksi hyvän työn piiriin. Yhdessä toimien ja yhteisvastuumme tuntien saamme iloisen mielen niin sairautta poteville kuin terveytensä säilyttäneillekin.



Myasteenikot ovat Koronan riskiryhmää

Lue lisää tämän sivun alalaidasta "Guidelines for the Treatment of Myasthenia Gravis (MG) and Lambert-Eaton Syndrome (LEMS) during the COVID-19 Pandemic" (suomennos sivulla MG taudin hoito)


MG-päivät ja vuosikokous peruttu


Yhdistyksen jokavuotiset MG-päivät Hämeenlinnassa peruttu Lue lisää



Kuntoutuskurssit


Seinäjoen kuntoutuskurssi PERUTTU Koronatilanteen vuoksi. Tilanteen salliessa pyrimme pitämään sen myöhemmin syksyllä.

Oulun kuntoutuskurssin tilanteesta tiedotamme myöhemmin. Lue lisää Oulussa järjestettävästä kurssista

Lääkkeiden korvattavuus- ja saatavuushaasteet

Suomen Apteekkariliiton tiedotteen mukaan lääkkeiden saatavuushäiriöt ovat vakava ja lisääntyvä maailmanlaajuinen ongelma. Lue lisää

Efedrin 30 mg
Efedrin 30 mg tukkuhinta nousee merkittävästi. Lääketukku Tamro ei hae uudelle tukkuhinnalle Kela korvausta. Uusi korvattavuushakemus on vireillä, mutta sen käsittely HILAssa kestää jopa useita kuukausia.

Mestinon 10 mg

Mestinon 10 mg saatavuushäiriöt ovat johtuneet lääkevalmistajasta. Uusiin valmisteisiin tullaan vaihtamaan lääkkeen säilyvyysaika viidestä vuodesta kolmeen vuoteen. Apteekit ovat palautteet valmiste-eriä takaisin valmistajalle. Siinä vaiheessa apteekissa on ilmennyt saatavuusongelma. Uusi erä  apteekkiin on ollut tilattavissa heti. Lääkkeen poisveto myynnistä on tapahtunut vain apteekkitasolla eikä kuluttajien tarvitse viedä jo ostamiaan takaisin apteekkiin. 

Lääkevalmistaja tiedottaa aina julkisuudessa (lehdissä, TV:ssä), jos lääke on jollakin tavalla sairautta vaarantava valmiste.

Eeva Liisa Kontturi
MG- yhdistys, Sairaanhoitaja

Muuta lääkeasiaa

-Myasteenikon kielletyt/vältettävät lääkkeet lista aukeaa tästä

-Efedrin 30 mg korvattavuus on voimassa 1.2.2019-30.6.2020
-Ubretidin korvattavuus voimassa 1.4.2020-30.6.2021
-Mytelase 10 mg korvattavuus voimassa 1.2.2019 - 31.5.2020

Hallituksen kuulumiset

Lue yhdistyksen hallituksen tuoreimmat päätökset tästä.

Aktiivista paikallistoimintaa 

Vakiintunutta paikallistoimintaa  on Porissa, Turussa, Helsingissä, Tampereella, Kuopiossa, Oulussa ja Jyväskylässä. Lisätietoa aiheesta  Paikallisyhdistykset

Olemme Facessa

Yhdistyksen omat Facebook-sivut löytyvät osoitteesta Suomen MG-yhdistys ry

Sivujen päivitys: Jos jokin asia askarruttaa sinua ja haluat nopeasti vastauksen, olethan yhteydessä hallituksen jäseniin henkilökohtaisesti. Yhteystiedot löytyvät sivuilta kohdasta Yhteystiedot.

Osta omaksi Minun tarinani -kirja

Minun tarinani on Sirkku Hihnalan ja Eeva-Liisa Kontturin kokoama teos myasteenikkojen tarinoista. Hanki kirja itsellesi tai lahjaksi hintaan 10 e + postituskulut 2,40 e. Tilaukset sähköpostilla toimisto@suomenmg-yhdistys.fi
Maksa tilaus yhdistyksen tilille Turun OP FI44 5542 4020 0254 54 ennen tilausta.

Guidance for the management of Myasthenia Gravis (MG) 

and Lambert-Eaton Myasthenic Syndrome (LEMS) during the COVID-19 pandemic


23 March 2020
International MG/COVID Working Group*

Corona Virus Disease 2019 (COVID-19) is a new illness caused
by a novel coronavirus, severe acute respiratory syndrome coronavirus 2
(SARS-CoV-2). Symptoms are variable but typically include fever, cough,
respiratory symptoms, diarrhea, reduction of smell and taste sensation.
Severity ranges from mild to severe and the virus may lead to pneumonia, acute
respiratory distress syndrome and death, in some patients. Nearly every country
in the world has been affected by this virus and is currently defined as a
pandemic, by the World Health Organization. There are no known proven therapies
for treating this virus and no vaccine to prevent the infection at this time.

No data currently exist on how COVID-19 affects people with
myasthenia gravis (MG)/LEMS or patients with other diseases on
immunosuppressive therapies. However, because most patients with MG are on immunosuppressive or immunomodulatory therapies and may also have respiratory muscle weakness, there is a theoreticla concern that MG/LEMS patients may be at higher risk of contracting the infection or experiencing severe manifestations of COVID-19.

Individuals with MG and LEMS have asked for guidance on the
use of therapies during the COVID-19 pandemic. There are numerous
recommendations circulating that attempt to provide clarity and guidance,
however, differences among the recommendations have created confusion.
Immunotherapy decision making varies significantly from country to country,
ranging from highly provider-directed to a collaborative decision-making model.
The advice below was developed by a panel of MG experts. We recognize that peer reviewed published literature regarding COVID-19 in MG or in immunocompromised patients to date is lacking.

The MG expert panel* suggests that therapy decisions should
be individualized and made collaboratively between the person with MG and
his/her healthcare provider. Based on their expert advice, it is suggested
that:

1. People with MG should follow the corresponding national
guidelines1 and any additional recommendations for people at risk for serious
illnesses from COVID-19.

Patients on existing therapies for MG/LEMS

2. MG/LEMS patients should continue their current treatment
and are advised not to stop any existing medications, unless specifically
discussed and approved by their healthcare provider.

3. There is no scientific evidence to suggest that
symptomatic therapies like Pyridostigmine or 3,4 Diaminopyridine increases the
risk of infection and should not be discontinued unless there are other
clinical reasons to do so.

4. Even though strong evidence is lacking, it is recommended
that MG patients already on immunosuppressive medications2,3 should practice
extra-vigilant social distancing, including avoiding public gatherings/crowds,
avoiding crowded public transport and where possible use alternatives to
face-to-face consultations (eg: telemedicine), if clinically appropriate.

5. When altering or stopping an existing immunosuppressive
therapy3 that carries a potential for increased disease activity and/or MG
exacerbation or crisis, people with MG and their MG healthcare providers should consider specific risks (e.g., age, comorbid health conditions, location) and benefits.

Infusion therapies, intravenous immunoglobulins and plasma
exchange

6. Certain infusion therapies in MG may require travel to
hospitals or infusion centers and we strongly recommend that this decision be
made based on regional incidence of COVID-19 and risk/benefit of the therapy
for the individual patient. The healthcare provider should be able to give
region-specific advice, and where possible consider switching to home infusion.

7. There is currently no evidence to suggest that intravenous immunoglobulin (IVIG4) or therapeutic plasma exchange (PLEX or TPE) carry any additional risk in catching COVID-19. However, the use of IVIG has to be based on individual patient need and indiscriminate use should be avoided.
In general, PLEX and IVIG should be reserved for patients with acute
exacerbations. However the panel recognize that there are some patients
receiving these as maintenance therapy, who should continue these, but extra
precautions may need to be taken because of the need for travel to and from a
healthcare facility.

8. There is currently no evidence to support that inhibition of complement using the monoclonal antibody (mAb), eculizumab increases susceptibility to COVID infection or its outcome.

Blood tests for existing therapies

9. Weigh risk and benefits of routine blood monitoring at this time. Some of the MG therapies require frequent blood work monitoring and decisions regarding the ongoing need for testing, which requires patient to leave their home, should be individualized and based on regional COVID-19
incidence.

What to consider when starting an immune therapy in patients
with MG/LEMS now?

10. Before starting a B-cell depleting therapy2 (e.g. rituximab), healthcare providers should consider the risk of worsening myasthenia or crisis and the risk of catching the viral infection. It may be advisable to delay initiation of cell depleting therapies, until the peak of the outbreak is over in their region. However, the risk of not starting the cell depleting therapy in occasional patients may outweigh the risk of severe COVID-19 infection and this has to be discussed with the patient in detail.

Advice for patients in ongoing clinical trials

11. Currently there are many clinical trials in progress for MG and we strongly recommend that any decision regarding ongoing need for in-person evaluations and treatments under the clinical trial be based with
consideration for patients’ best interest. At present, there is no scientific
evidence to suggest that complement inhibitors or neonatal Fc Receptor blockers (FcRn) may increase the risk of catching the viral infection, but the panel recommends extra precautions (as in point 4 above), to minimize the risk. In clinical trials this also has to be discussed and approved by the trial
sponsor, instituitional review board and medical monitor.

Is there reasonable evidence for medications treating COVID 19?

12. Various medications have been mentioned in the news and
social media as being useful to treat COVID-19 (e.g., choloroquin,
azithromycin, anti-virals etc), however, these are not proven to be effective
or studied systematically at this time. Patients should be aware that some of
these medications can potentially worsen MG and should avoid using these without specific medical approval. If the evidence changes and suggests there is benefit for treaing COVID-19, these treatments should be used under strict
medical supervision weighing the risks and benefits in an individual patient.

Should MG or LEMS patients go for vaccinations?

13. Vaccinations can protect for a variety of infections/pathogens. However, in the current situation it is recommended to only use dead vaccines in this patient group. For COVID-19, there is no vaccine available currently.

What if patients have already contracted COVID-19?

14. Most patients who develop COVID-19 have mild disease and
should continue the current best practice standard of care for MG/LEMS. There
might be a need to increase the dose of corticosteroids as in standard
infection/stress protocol. However, if the symptoms are severe (requiring
hospitalization) it may be worthwhile considering pausing current strong
immunosuppression temporarily, especially if there is additional super added
infections/sepsis. Immune depleting agents should not be given under such
condition, milder immune-suppressive agents (azathioprine, mycophenolate)
should probably be continued, since effects of dosing are longer lasting, wash
out takes longer and rebuilding of effects take several months.

15. Most decisions for treatment escalation have to be individualized based on the relative severity of COVID-19 and MG.

*These recommendations have been prepared and endorsed by a
an international working group of MG experts in response to COVID-19 pandemic.

In alphabetical order:

Amanda Guidon, MD, Department of Neurology, 
Massachusetts General Hospital, Boston, MA 02114, USA

Jeff Guptill, MD, Department of Neurology,
Duke University Medical Center, USA

Michael Hehir, MD, Department of Neurology
University of Vermont Medical Center
Burlington, Vermont 05401, USA

James F. Howard Jr., MD,Department of Neurology The University of North Carolina at Chapel Hill Chapel, Hill, NC 27599-7025, USA

Isabel Illa, MD, PhD, Catedràtica Neurologia U.A.B. Unitat Patologia Neuromuscular Servei Neurologia
Hospital Santa Creu i Sant Pau C/ Pare Claret 167 Barcelona 08025 Spain

Saiju Jacob, MBBS, MD, DPhil,Department of Neurology and Neuroimmunology
University Hospitals Birmingham, B15 2TH, United Kingdom

Renato Mantegazza, MD, Department of Neuroimmunology and Neuromuscular Diseases, Fondazione I.R.C.C.S. Istituto Neurologico Carlo Besta
Via Celoria 11 - 20133 Milano, Italy

Srikanth Muppidi, MD, Department of Neurology
Stanford Neuroscience Health Center, Palo Alto, CA 94304, USA

Hiroyuki Murai, MD, PhD, Department of Neurology, School of Medicine
International University of Health and Welfare, Narita, Japan

Richard J. Nowak, MD, Department of Neurology
Yale University School of Medicine, New Haven, CT 06520, USA

Kimiaki Utsugisawa, MD, PhD, Department of Neurology
Hanamaki General Hospital, Japan

John Vissing, MD, PhD Department of Neurology
2082 Rigshospitalet, University of Copenhagen DK-2100 Copenhagen, Denmark

Heinz Wiendl, MD, Department of NeurologyInstitute of Translational Neurology University of Münster Münster, Germany


Decisions regarding immunotherapy use should be
individualized and made by the person with MG and his/her healthcare provider.
For additional questions, we encourage that patients contact their MG provider.

We are continuing to monitor this quickly evolving situation
and these recommendations may be modified as data becomes available.

1
This list is not exhaustive, but only representative – please check for up to
date guidance in each country/region: a. CDC guidelines b. European CDC
guidelines c. UK guidelines d. Australia e. Japan

2
B-cell depleting therapies include: rituximab, ocrelizumab

3
Immunotherapies which on withdrawal carries potentially severe increase in
disease activity, relapse, and exacerbation/crisis include: corticosteroids,
azathioprine, mycophenolate mofetil, methotrexate, cyclosporine, tacrolimus and
others.

4
Immunodulatory therapies: IVIG/SCIG (intravenous immunoglobulin, subcutaneous
immunoglobulin)