שאלה לד"ר ציצוביץ

שלום ד"ר אני בחורה בת 30 ובחורף שעבר אובחנה אצלי תופעת רנו וכן סקלודרמה בצורה די חמורה היה חורף קשה מאוד עם כיבים פתוחים בקצות האצבעות וטיפולים מתישים. בקיץ היה הרבה יותר נעים,אך אז החלו תופעות הסקלודרמה שכוללות כתמים לבנים בעור כמו המתחות וקריעה של העור באיזור הידיים,המצח והחזה. האם ישנה דרך לעכב את ההתפתחות של כתמים אלה והאם יש לזה סוף באיזהשהוא שלב או שכל כולי אהפוך להיות לבנה בסופו של דבר? הרופאים המליצו על כדור שלוקחים פעם בשבוע אך יש לו תופעות כמו של טיפול כימותרפי קל ואז צריך לקחת עוד 3 כדורים למניעת התופעות,דבר שגורם לי לא לרצות לקחת אותו. חשוב לי לציין כי איני לוקחת כרגע כדורים למעט לוסק,שאמור לעזור בעיכוב החומציות בקיבה כדי שהריאות לא יפגעו,ובחודש האחרון לקחתי אספירין אך הכיבים באו בעוז והבנתי שהאספירין לא נותן לי תשובה אז חדלתי מלקחת אותו גם. האם יש פתרונות?האם יש סוף למחלה או שאצטרך להתמודד איתה כל חיי? כרגע אני בהכנות לנסיעה למקום חם יותר מכיוון שאיני מסוגלת לעבור פה עוד חורף לא מבחינה נפשית ולא מבחינה פיזית. אשמח לקבל תגובה,יעוץ ודיעה בברכת יום נעים גאיה

הנושא אינו בתחום ההמטולוגיה. עלייך לפנות לראומטולוג / מומחה למחלות אוטואימוניות.

והמשך יום נעים

גאיה שלום נעים מאד. גם אני סובלת מהסמפטומים שלך אלא שבאופן קל יותר. אשמח להתכתב איתך ולשתפך בדרכים שאני מתמודדת עם התופעות. אני גרה בירושלים שכידוע לך קרה בחורף. אך הרנו מופיע גם כשמתרגשים או פוחדים או עצבניים וכדומה. נכון יש קושי להתמודד עם הכיבים בידיים... אם את מעוניינת לשתף ולהתמודד יחד אולי נעשה זאת יחד... אגב הלוסק לי לא עזר אני משתמשת במשהו אחר ומצוין! אורנה

http://www.nhlbi.nih.gov/health/public/blood/other/raynaud.htm http://www.raynauds.demon.co.uk http://www.nlm.nih.gov/medlineplus/raynaudsdisease.html http://www.nlm.nih.gov/medlineplus/scleroderma.html http://www.emedicine.com/med/topic2076.htm http://www.emedicine.com/med/topic1993.htm http://www.sclero.org/medical/symptoms/raynauds/a-to-z.html http://www.sclero.org/medical/symptoms/raynauds/treatment.html http://www.niams.nih.gov/hi/topics/raynaud/ar125fs.htm ************************************** Arthritis Rheum 2001 Aug;44(8):1841-7 Calcium-channel blockers for Raynaud's phenomenon in systemic sclerosis. Thompson AE, Shea B, Welch V, Fenlon D, Pope JE University of Western Ontario, London, Canada. OBJECTIVE: Most patients with systemic sclerosis (SSc) have Raynaud's phenomenon (RP), which is often more severe than idiopathic RP. This study was a meta-analysis to determine the efficacy of calcium-channel blockers for the treatment of RP in SSc. The primary outcome measures were frequency and severity of ischemic attacks, digital skin temperature, patient and physician global assessments, and digital ulcers. METHODS: The Cochrane search strategy was used to ascertain all trials in all languages. Primary data sources included Medline, Current Contents, and the Cochrane Controlled Trials Register. Studies that met the inclusion criteria were randomized controlled trials of >2 days' duration with a dropout rate of <35%. Twenty-nine studies were found, of which 8 randomized controlled trials were eligible for inclusion. The total number of patients included was small (n = 109). Most trials included primary and secondary RP, and the main reasons for trial exclusion were inability to extract subset data on SSc patients (18 trials), data published previously (2 trials), and lack of a control group (1 trial). Data were abstracted independently by 2 reviewers, and either a weighted mean difference (WMD) or a standardized mean difference (SMD) was calculated for all continuous outcomes; however, information was not available for all outcomes within trials. RESULTS: The WMD of all calcium-channel blockers versus placebo (6 trials) and of nifedipine alone versus placebo (5 trials) for the reduction in the frequency of ischemic attacks over a 2-week period was -8.31 (95% confidence interval [95% CI] -15.71, -0.91) and -10.21 (95% CI -20.09, -0.34), respectively. The SMD of all calcium-channel blockers versus placebo (3 trials) and of nifedipine alone versus placebo (2 trials) for the reduction in the severity of ischemic attacks was -0.69 (95% CI -1.21, -0.17) and -0.99 (95% CI -1.74, -0.24), respectively. CONCLUSION: Calcium-channel blockers for RP in SSc have been tested in several small clinical trials and appear to lead to significant clinical improvement in both the frequency and the severity of ischemic attacks. Most trials were crossover trials in which order effect was not studied. This could have introduced bias. The results of this study suggest that the efficacy of calcium-channel blockers in reducing the severity and frequency of ischemic attacks in RP secondary to SSc is moderate at best (mean reduction of 8.3 attacks in 2 weeks and 35% less severity), and a further large, randomized controlled trial needs to be conducted. ******************************************* Am Surg 2001 Nov;67(11):1096-7 Clinical and objective data on spinal cord stimulation for the treatment of severe Raynaud's phenomenon. Neuhauser B, Perkmann R, Klingler PJ, Giacomuzzi S, Kofler A, Fraedrich G Department of Vascular Surgery, University Hospital Innsbruck, Austria. [Medline record in process] Ischemic vascular disease of the upper extremity represents a difficult therapeutic problem wherein medical treatment often fails. Epidural spinal cord stimulation has been shown to be an effective alternative in severe peripheral arterial disease. Although this method has been used for nearly two decades only limited experience exists in Raynaud's phenomenon of the upper limbs. In addition objective parameters to prove therapeutic success are not well defined. Herein we describe a patient with severe primary Raynaud's phenomenon over several years who had significant pain relief and complete healing of ischemic digital ulcerations after spinal cord stimulation. Pain level was evaluated using a visual rating scale before and after surgery. Microcirculatory parameters were assessed before and after spinal cord stimulation by capillary microscopy and laser Doppler anemometry. Significant improvement of red blood cell velocity, capillary density, and capillary permeability was demonstrated. At follow-up 18 months after surgery the patient had no complaints and all ulcerations of her fingertips had healed. Spinal cord stimulation appears to be an effective treatment in severe cases of Raynaud's phenomenon and we recommend its use in the case of failed medical therapy. Pain rating and capillary microscopy enable one to assess and visualize the effects of spinal cord stimulation. ************************************** Drug treatment of peripheral vascular disease. Eberhardt RT, Coffman JD Department of Vascular Medicine, Boston University School of Medicine, Boston, Massachusetts. [Medline record in process] There are a limited number of clinically effective pharmacotherapeutic agents for treatment of peripheral vascular disorders. Pentoxifylline and cilostazol are available for the symptomatic treatment of intermittent claudication. Analogs of carnitine and L-arginine are being evaluated for treatment of the symptoms of intermittent claudication, and prostaglandins and growth factors are being evaluated for critical limb ischemia. Calcium channel blockers remain the treatment of choice for Raynaud's phenomenon. Alternative vasodilators may be used selectively to treat individuals with Raynaud's phenomenon who are intolerant of calcium channel blockers or in whom such therapy has been unsuccessful. Prostaglandins have been evaluated in patients with refractory Raynaud's phenomenon who also have digital ulceration. The mainstay of short-term treatment (and prophylaxis) of deep vein thrombosis (DVT) has been unfractionated heparin, but now the use of low molecular weight heparin (LMWH) has emerged. Newer agents, such as heparinoids and direct thrombin inhibitors, hold promise for the prevention and treatment of DVT. Prolonged treatment with warfarin is still required to prevent recurrent thrombosis, although the duration of treatment has come under debate. ******************************************** Am J Clin Dermatol 2001;2(5):315-25 Treatment of systemic sclerosis. Steen VD Department of Medicine, Georgetown University, Washington, DC, USA. [email protected] [Medline record in process] Systemic sclerosis is an extremely variable disease in its manifestations and consequently, treatment needs to be individualized depending on the specific problems that each patient has. Limited scleroderma patients have a prolonged duration of Raynaud's phenomenon and puffy fingers before they develop any skin thickening, digital ulcers or gastrointestinal symptoms. They are likely to present with all the classic manifestations of scleroderma. Diffuse scleroderma patients have a much more acute systemic onset with marked whole hand swelling and may initially have only subtle skin thickening. A good understanding of the differences between the natural history of limited and diffuse scleroderma will enable the physician to treat present problems and anticipate future ones more effectively. One should determine which major subset and organ systems are involved before deciding on the appropriate therapy. Advances in organ-specific therapy, particularly calcium channel antagonists in Raynaud's phenomenon, proton pump inhibitors in esophageal reflux, intravenous iloprost and endothelin receptor antagonists in pulmonary hypertension, and ACE inhibitors in renal crisis, have decreased morbidity and mortality in patients with scleroderma. Studies of aggressive therapies to prevent or improve pulmonary fibrosis are in progress. Further clinical experience in wound healing, gastrointestinal malabsorption and physical therapy for loss of motion has helped patients to have a more comfortable life. In recent years, a significant number of controlled clinical trials have been performed and there has been improved understanding of the best way to perform studies and of which patients are most likely to respond to therapy. Penicillamine, methotrexate, photopheresis, relaxin, interferons, and cyclosporine have all been studied in controlled trials with variable outcomes. Although an overall remittive therapy has not yet been determined, new, potentially useful agents are being investigated. ************************************************* Heart Dis 1999 Mar-Apr;1(1):29-40 Use of prostacyclin and its analogues in the treatment of cardiovascular disease. Fink AN, Frishman WH, Azizad M, Agarwal Y Department of Medicine, The Albert Einstein College of Medicine/Bronx Municipal Hospital Center, Bronx, New York. [Medline record in process] Prostacyclin is found in all body tissues and body fluids, and is the major metabolite of arachidonic acid in the vasculature. It is a potent vasodilator that affects both the systemic and pulmonary circulations. Prostacyclin also prevents vascular smooth muscle proliferation and inhibits platelet adhesion and aggregation. These features have made it a very attractive substance for treatment of many different cardiovascular diseases. Epoprostenol, a synthetic prostacyclin, is currently available in parenteral form for the treatment of primary pulmonary hypertension, and has been shown to be a valuable palliative therapy. The drug appears to have limited effectiveness for treating patients with congestive heart failure and coronary artery disease, but has shown some utility in patients with peripheral vascular disease, including Raynaud's phenomenon. Analogues of prostacyclin are now in clinical trials and include iloprost, a stable analogue that has been used intravenously to treat patients with peripheral vascular disease. Other parenteral formulations under investigation include taprostene, ciprostene, and UT-15. Beraprost and cicaprost, are two prostacyclin analogues that can be used in oral form, are being studied in clinical trials. *************************************************** Acta Derm Venereol 2001 Aug-Sep;81(4):294-7 Systemic sclerosis-related raynaud's phenomenon: effects of iloprost infusion therapy on serum cytokine, growth factor and soluble adhesion molecule levels. Mittag M, Beckheinrich P, Haustein UF Department of Dermatology, University of Leipzig, Germany. [Medline record in process] Microvascular damage occurs in systemic sclerosis and is associated with increased serum levels of endothelial adhesion molecules and endothelium-associated cytokines, including vascular cell adhesion molecule-1 (VCAM-1), intercellular adhesion molecule-1 (ICAM-1), E-selectin, endothelin-1 and vascular endothelial growth factor (VEGF). Iloprost, a prostacyclin analogue, induces clinical benefit in patients suffering from scleroderma-related Raynaud's phenomenon. This study was performed to investigate the effect of iloprost infusions on endothelium activation. Serum samples from 12 patients with systemic sclerosis were examined using specific enzyme-linked immunoassays. The serum levels of sICAM-1, sVCAM-1 and soluble E-selectin were initially elevated and significantly reduced after iloprost infusions. The serum concentrations of VEGF and endothelin-1 revealed decreased levels after therapy too. These results indicate that the well-known clinical benefit of iloprost infusions on Raynaud's phenomenon is serologically detectable by a reduction of serum levels of endothelium-associated adhesion molecules, cytokines and growth factors reflecting an improvement in endothelial function. ***************************************************************** Clin Exp Rheumatol 2001 Sep-Oct;19(5):503-8 Effects of long-term cyclic iloprost therapy in systemic sclerosis with Raynaud's phenomenon. A randomized, controlled study. Scorza R, Caronni M, Mascagni B, Berruti V, Bazzi S, Micallef E, Arpaia G, Sardina M, Origgi L, Vanoli M Clinical Immunology and Allergy, University of Milan, IRCCS Ospedale Maggiore, Milan, Italy. [email protected] [Medline record in process] OBJECTIVE: Iloprost is a stable prostacyclin analogue which has been shown to be effective in the short-term symptomatic treatment of Raynaud's phenomenon (RP) secondary to systemic sclerosis (SSc). The aim of this study was to evaluate the effects of long-term cyclic therapy with iloprost in comparison with nifedipine on the skin score, pulmonary function and Raynaud's severity score in patients with SSc and RP. METHODS: We conducted a 12-month prospective, randomised, parallel-group, blind-observer trial to compare the effects of intravenously infused iloprost (2 ng/kg/min on 5 consecutive days over a period of 8 hours/day and subsequently for 8 hours on one day every 6 weeks) with those of conventional vasodilating therapy with nifedipine (40 mg/day for os) in 46 patients with SSc and RP. RESULTS: At 12 months, iloprost but not nifedipine reduced the skin score (iloprost: from 13.26 +/- 2.05 to 9.26 +/- 1.32, p = 0.002; nifedipine: from 10.83 +/- 2.09 to 12.17 +/- 3.02, p = n.s.; iloprost vs nifedipine: p = 0.016) and the RP severity score (iloprost: from 2.17 +/- 0.2 to 1.22 +/- 0.13, p = 0.02 vs baseline; nifedipine: from 2.08 +/- 0.34 to 1.33 +/- 0.22, p = n.s.). Carbon monoxide diffusing capacity (DLCO), expressed as % of the predicted normal value, worsened significantly in the nifedipine group (from 69.6 +/- 7.4% to 61.5 +/- 6.5%, p = 0.044) and remained stable in patients treated with iloprost (from 53.2 +/- 4.8 to 56.0 +/- 4.6%, iloprost vs nifedipine: p = 0.026). CONCLUSION: In SSc patients, cyclic intravenous iloprost infusion is able to control vasospastic disease. Our results suggest that it might also act as a disease-modifying agent, as it seems to improve the course of the disease. Further studies principally focused on organ involvement and the natural history of the disease are needed to confirm our results. *********************************************** Rheumatology (Oxford) 2001 Sep;40(9):1038-43 Treatment of Raynaud's phenomenon with the selective serotonin reuptake inhibitor fluoxetine. Coleiro B, Marshall SE, Denton CP, Howell K, Blann A, Welsh KI, Black CM Centre for Rheumatology (Royal Free Campus), Royal Free and University College School of Medicine, Rowland Hill Street, London, UK. OBJECTIVE: To compare fluoxetine, a selective serotonin reuptake inhibitor, with nifedipine as treatment for primary or secondary Raynaud's phenomenon. METHODS: Twenty-six patients with primary and 27 patients with secondary Raynaud's phenomenon were assigned randomly to receive 6 weeks of treatment with fluoxetine (20 mg daily) or nifedipine (40 mg daily). Following a 2-week washout period, each group was crossed over to the other treatment arm. The primary outcome variable was the frequency of attacks of Raynaud's phenomenon. Self-reported attack severity, thermographic recovery from cold challenge and plasma levels of von Willebrand factor and soluble P-selectin were also measured. RESULTS: There was a reduction in attack frequency and severity of Raynaud's phenomenon in patients treated with either fluoxetine or nifedipine, but the effect was statistically significant only in the fluoxetine-treated group (P=0.0002 for attack severity and P=0.003 for attack frequency). Subgroup analysis showed that the greatest response was seen in females and in patients with primary Raynaud's phenomenon. A significant improvement in the thermographic response to cold challenge was also seen in female patients with primary Raynaud's phenomenon treated with fluoxetine but not in those treated with nifedipine. There was no significant treatment effect on von Willebrand factor or soluble P-selectin. No significant adverse effects occurred in the fluoxetine-treated group. CONCLUSION: This pilot study confirms the tolerability of fluoxetine and suggests that it would be effective as a novel treatment for Raynaud's phenomenon. Larger and placebo-controlled trials are warranted to assess fluoxetine's therapeutic potential further in this vasospastic condition. ****************************************************

אומנם נסיבות לא ממש משמחות אבל נעים לי מאוד להכיר ירושלים זה לא מקום ממש טוב לאנשים כמוך לא? מה זה המשהו האחר שאת משתמשת בו? יש לך סקלודרמה או רק רנו? כי חשבתי שהבעיות במערכת העיכול זה אופייני רק לסקלודרמה ולא לרנו.. בכל מקרה אשמח לשמוע ממך באי מייל שלי ואשמח לשמוע איך את מתמודדת... ובקשר לרנו שמתעורר גם כשעצבניים ובמתח אז אלה בדיוק שני הדברים שאני מקפידה לא לעשות. מאחלת לך המשך נעים לבינתיים וחום..חום..חום... גאיה נ.ב.בת כמה את?