Announcement

Collapse
No announcement yet.

German Treatment for Progressive MS: Anyone heard of this?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    German Treatment for Progressive MS: Anyone heard of this?

    Intrathecal TCA therapy for multiple sclerosis

    This information bulletin is intended primarily for MS patients with primary or secondary chronic progressive MS form and spinal symptoms, ie. With inflammation in the spinal cord or in the brain stem It is based on written surveys of chief medical neurological clinics in hospitals, neurosurgery centers and university institutes, which are known for the treatment of MS patients. The survey was supplemented by personal experiences of participants in a patient's initiative in Northern Germany.

    From the responses of 108 and publications clinics is apparent that in addition to the well-known MS therapies have long is a treatment method that in 50-70% of all cases, a suitable - temporary and repeatable - can be expected improvement of symptoms, particularly for complaints such as ambulation, spasticity and bladder problems. It is used by 32% of the responding hospitals regularly or occasionally. The procedure is often used in cases when other treatment measures have not led to improvement of symptoms.

    According to some clinics therapy should be started as soon as possible after diagnosis. In appropriate cases and in experienced hands, the experts do see a status. The process was established in 2003 by an expert panel in the "Recommendations for the symptomatic treatment of multiple sclerosis," specially recorded for the treatment of spasticity and of the Multiple Sclerosis Therapy Consensus Group (MSTKG) as a supplement in the journal "The Neurologist" (vol. 75, published in Issue 8, August 2004). Quote: "The intrathecal administration of triamcinolone acetonide crystal suspension is the future possibly another way of treatment of spinal spasticity, having recently been shown that this means an extension of the walking distance, as well as an improvement in EDSS are verifiable and not have serious side effects were too. This therapy should only be conducted within studies or in clinics with specific experience. " Such clinics are listed in the following address list.

    When the process is analogous to the known lumbar puncture using atraumatic puncture needles is usually 40 mg, sometimes 80 mg of depot corticosteroid TCA (triamcinolone acetonide, Volon ©-A) was injected into the spinal fluid. TCA is a well-known drug for decades. The treatment requires not only a unique suitability of the patient in an aseptic environment and approach as well as practical experience and skill of the treating physician.

    Most eg during a stay in hospital for 3-4 weeks 1-2x per week performed a basic treatment and, in most cases prescribed subsequent downtime of 2-8 hours, thus the uniform distribution of the injected crystal suspension is ensured. Often, the improvements are occurring thereafter (sometimes only 3-4x a year) maintained by an external, single dose at intervals of 4-8 weeks. After the experience TCA is well tolerated, side effects (eg, headache) are rare.

    Some hospitals are talking about several thousand routinely performed and treatments of 200 or more TCA injections per year, in all cases without serious complications. Combined intrathecal TCA therapy is known as a recommended treatment with minimal side effects, which is used in some hospitals conducted for decades with good results.

    Source: PinC (patient initiative intrathecal cortisone) - Stand 14.07.2005 / Dipl. Hans W. Scheidt leak

    Facility Comment of the institution
    Department
    District Hospital
    the University of Regensburg
    AG Neuroimmunology,
    93053 Regensburg

    Intrathecal therapy with Volon ®-A is in our house occasionally performed in patients with severe spinal and significantly advanced symptoms. In our experience, it is seldom in the standard precautionary problems. The therapy is our impression that effective in some patients, usually in the form of a noticeable improvement in spasticity. The therapy is purely symptomatic effect usually only temporary and does not prevent the further progress when the disease is still active. We choose this measure, especially in patients with advanced MS, when other forms of therapy are no longer possible.
    Charité University Hospital Berlin,
    Department of Neurology,
    10098 Berlin

    After that offers an intrathecal administration of triamcinolone acetonide (Volon ®-A) and symptomatic (rather than causal) treatment of such patients who suffer regardless of exacerbations in (painful) spasticity of the lower limbs, often associated with bladder dysfunction. The administration of Volon ®-A may, in such cases, perform both in the context of a primary or secondary chronic progressive multiple sclerosis to an objectively defined improvement of spastic gait disorders and pain syndromes .. If successful, we repeat this action, if the practical Durchführbarbeit is given at regular intervals (every 4-8 weeks), and in addition to a causal oriented immunomodulatory therapy (eg, with interferon-beta). This corresponds to the practice in other hospitals.
    Psychiatric Hospital Bamberg
    Department of Neurology

    We do this (note: the Volon © intrathecal therapy in MS) in our house by regularly, but according to the results of Rohrbach et al. mainly in spinal related symptoms, may also reduce pain. I think a refresher treatment only useful for renewed deterioration. The therapy is expected at these institutions to roughly follow the same rules. Limiting I should still say that at long preexisting failures usually no or only a slight improvement can be achieved.
    Clinic for Neurology Dietenbronn GmbH,
    Academic Teaching Hospital of the University of Ulm
    88477 Schwendi

    In our house, the MS treatment is performed occasionally with Volon © A. In patients suitable for this purpose, we give 40 mg TCA. We give our patients during a hospital stay 1 - 3 times 40 mg intrathecal TCA approximately every 3 days. These treatments are then repeated at intervals of about 6 weeks. Patients usually report on its own after about 4 weeks, when they notice a decrease in the therapeutic effect. After the injections, we prescribe a waiting time of 2 hours. This method has proven very good for the treatment of massive Paraspastik the legs so prevalent in the symptomatic treatment of MS. In acute exacerbations or florid disease activity and chronic progressive patients us the method, however, appears not to be as effective as. Iv administration of high-dose prednisolone
    Academic Teaching Hospital of the University of Tübingen,
    Municipal Hospital Sindelfingen, ABTG. Neurology
    71065 Sindelfingen

    We apply this method routinely for over 20 years. [...] We have regularly TCA (Volon ©-A), meanwhile, certainly in more than 10,000 patients, mainly with MS put into application. Previously, we have convinced ourselves that the electron microscope can be represented crystals of TCA in the medium of the cerebrospinal fluid in the incubator dissolve uniformly and cause radicular syndrome. Complications were not observed. Rarely produces a postpunktioneller headache, but occurs less frequently with co-administration of TCAs. Legeartis applied, so far I could not find any adverse side effects. On the other hand, the combination of TCA and Pulse therapy has a very favorable course of MS, especially in the spinal-onset form. However, we have patients who only received TCA, every 4 to 6 months. Of multiple injections at short intervals, I do not think much, especially since the half-life of TCA is sufficiently long and the substance in the cerebrospinal fluid lingers long proven to have no major systemic side effects.
    Ruhr-University Bochum,
    St. Joseph's Hospital
    Study Center for Multiple Sclerosis
    44791 Bochum

    We currently treat about 110 patients with predominantly spinal curves of MS with intrathecal Volon-A therapy. The type of treatment was introduced about 18 years ago with us. If the criteria are met, runs from the treatment regimen: 6 x intrathecal therapy with 40 mg Volon-A within 3 weeks (booster treatment); next appropriate safety standards and additional examinations, with a defined therapeutic success are (individually) at a distance of 4 - performed 12 weeks off maintenance treatment . Long-term experience are up to 12 years.
    Sauerland clinic Hachen
    Neurological specialist clinic especially for multiple sclerosis
    59846 Sundern

    In the Sauerland clinic Hachen as MS-specialty hospital, this treatment is carried out for years with good results. I even treat MS patients with predominantly spinal symptoms since 1972 with annual injections 100-200, so far without any significant side effects.

    Address list of clinics that use the intrathecal TCA treatment regularly or occasionally

    (Proficiency: 14.07.2005 / sorted by zip code)

    06120 Halle / Saale

    Hr. Dr.F.Hoffmann

    Städt. Martha-Maria Hospital, Department of Neurology

    Tel: 0345-55 91 891

    10117 Berlin

    Hr. Dr.R.Zschenderlein

    Charité, Department of Neurology

    Tel: 030-450-572079

    13347 Berlin

    Fri Prof.Dr.J.Haas

    Jewish Hospital Berlin, ABTG. Neurology

    Tel: 030-4994-2348

    15755 Teupitz

    Hr. Dr.J.Faiss

    Neurological Landesklinik

    Tel: 033766-66336

    17258 Feldberg (Meckl.-Vorpommern)

    Hr: Dr.Chr. Bucka

    Clinic on Sheridan Lake, ABTG. Neurology

    Tel: 039831-52-0

    21677 Stade

    Hr. Dr.J.Igloffstein

    Same-Hospital, Department of Neurology

    Tel: 04141-97-1350/51

    22087 Hamburg

    Hr. Prof.Dr.T.Weber

    St. Mary's Hospital Hamburg, Department of Neurology

    Tel: 040-2546-2602

    24106 Kiel

    Hr. Dr.W.Wabbel

    Lubinus Clinic, Anesthesia

    Tel: 0431-388281

    26702 Emden

    Hr. Prof. Dr. Büttner

    Hospital of the City of Emden

    Phone: 04921-98 13 18

    27574 Bremerhaven

    Hr. Dr. Odin

    Central Hospital Reinkenheide

    Tel: 0471 - 299 3419

    30559 Hannover (Kirchrode)

    Hr. Prof.Dr.F.Heidenreich

    Hospital Henriettenstiftung, Neurol. Clinic,

    Phone: 0511-289-3

    30632 Hannover

    Hr. Prof.Dr.J.Bufler

    Medical School (MHH), ABTG. Neurology

    Tel: 0511-532-2391

    35385 Gießen

    Hr. Dr.P.Oschmann

    University of Giessen, Department of Neurology

    Tel: 0641-99 45 306

    35789 Weilmünster

    Hr. Prof.Dr.C.Hornig

    Hospital Weilmünster, Neurology

    Phone: 06472-60-292

    40225 Dusseldorf

    Hr. Prof.Dr.HPHartung

    University Hospital Dusseldorf, Neurol.Klinik

    Tel: 0211-81-17880

    44791 Bochum

    Hr. Dr.SKSchimrigk

    Ruhr-University, Department of Neurology

    Tel: 0234-509-2420

    53567 Asbach

    Hr. Prof.Dr.D.Pöhlau

    Camillus Hospital, ABTG. Neurology

    Phone: 02683-59-0

    59457 Werl

    Hr. S.Kreijenveld

    Drs (NL) Sybrandus Kreijenveld

    Tel: 02922-97360

    59846 Sundern-Hachen

    Hr. Dr.M.Heibel

    Sauerland clinic Hachen, MS specialist clinic

    Phone: 02935-808-0

    59846 Sundern-Langenscheid

    Hr. Dr.Z.Mir

    Clinic Dr. Evers

    Phone: 02935-807-0

    60488 Frankfurt am Main

    Hr. Prof.Dr.RWJanzen

    Hospital Northwest

    Phone: 069-7601-3246 or -47

    61462 Königstein-Falkenstein

    Fri Dr.G.Japp

    Asklepios Neurology Falkenstein

    Phone: 06174-90 60 30

    63739 Aschaffenburg

    Hr. Prof.Dr.R.Schneider

    Hospital, Department of Neurology

    Tel: 06021-32-3050

    65191 Wiesbaden

    Hr. Dr.E.Lensch

    German Diagnostic Clinic, Department of Neurology

    Tel: 0611-577 321

    66280 Sulzbach

    Hr. Dr.M.Gawlitza

    Knappschaftskrankenhaus, ABTG. Neurology

    Tel: 06879-574-1131

    66421 Homburg / Saar

    Hr. Dr.S.Jung

    Saarland University, Department of Neurology

    Tel: 06841-1624-129

    66821 Neunkirchen / Saar

    Hr. Dr.V.Fischer

    Municipal Hospital, ABTG. Neurology

    Phone: 06821-18 27 01

    70191 Stuttgart

    Hr. Prof.Dr.H.Wiethölter

    Civil Hospital, Department of Neurology

    Tel.0711-253-2401

    71065 Sindelfingen

    Hr. Prof. Dr.ISNeu

    Municipal Hospital, ABTG. Neurology

    Tel: 07031-98-2361/62

    79106 Freiburg

    Hr. PD Dr.S.Rauer

    University of Freiburg, Department of Neurology

    Tel: 0761-270-5308

    85540 Munich

    Hr. Dr.W.Büchele

    District Hospital Munich-Haar ABTG. Neurology

    Tel: 089-45 62 37 43

    88477 Schwendi

    Hr. Prof.Dr.E.Mauch

    Clinic for Neurology Dietenbronn

    Phone: 07353-989-0

    89081 Ulm

    Hr. Dr.H.Tumani

    University of Ulm, Department of Neurology

    Tel: 0731-177-120

    93053 Regensburg

    Hr. Dr.A.Steinbrecher

    District Hospital Regensburg, ABTG. Neurology

    Tel: 0941-941-3350

    95326 Kulmbach

    Hr. Dr. Kirchhoff

    Hospital - Dept. of Anaesthesiology and Intensive Care Medicine

    Tel: 09221-980

    96049 Bamberg

    Hr. Prof.Dr.P.Krauseneck

    Psychiatric Hospital, Department of Neurology

    Tel: 0951 - 954-1201

    CH-4031 Basel

    Hr: Prof.Dr.L.Kappos

    Neurol.-Neurochirurg.Poliklinik, University Hospital Basel

    Tel: 0041-61265 44 64

    ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

    #2
    Thank you for the information. It sounds like another steroid therapy. They might have been doing it for 20 years but it seems as if there was something special about it it would have caught on after so long. It also doesn't seem to agree with long-term evidence that primary and secondary progressive is a degenerative - not an inflammatory - stage. If it isn't inflammatory then steroids don't help. Solu-Medrol steroid therapy helps very few people with progressive MS and not for very long so I don't understand how this therapy would be any different. And I think that if it really worked one of the companies that made triamcinolone before it went generic would have had it approved for progressive MS. There has to be a reason why that never happened.

    And I have to ask here - isn't there an MS World rule against copying and pasting?

    **Moderators note: You may copy and paste if you follow rule #5.
    5. COPYRIGHTED MATERIAL: MSWorld is a public forum but is protected by copyright laws. Do not copy any part of our web content and place it on another website without requesting permission from MSWorld. Do not copy material from any other website and post it on the message board or use it in chat without acknowledging the reference. Any person who disregards this rule may be subject to legal action. To request such permission, please e-mail Administration@msworld.org**

    Comment


      #3
      Originally posted by MSer102 View Post

      5. COPYRIGHTED MATERIAL: MSWorld is a public forum but is protected by copyright laws. Do not copy any part of our web content and place it on another website without requesting permission from MSWorld. Do not copy material from any other website and post it on the message board or use it in chat without acknowledging the reference. Any person who disregards this rule may be subject to legal action. To request such permission, please e-mail Administration@msworld.org**
      MSer102 - Acknowledgment of the reference was given, so it was approved.
      1st sx '89 Dx '99 w/RRMS - SP since 2010
      Administrator Message Boards/Moderator

      Comment

      Working...
      X