jefa

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Posts posted by jefa


  1. Hi, Birdman, it's good to hear from you. Sorry you are still having difficulties with your lungs. I know there are several people on the site who have had experience with Azathioprine (Imuran is one drug company's name for it). Hopefully they will share their experiences. Here is our page on Immunosuppressants which has a section on this drug:

     

    Azathioprine (Imuran). Patient Education. American College of Rheumatology.

     

    Twelve-month azathioprine as maintenance therapy in early diffuse systemic sclerosis patients treated for 1-year with low dose cyclophosphamide pulse therapy. This study suggests a role of AZA in maintaining the improvement induced by low dose pulse CYC in early dcSSc, making it possible a short duration of treatment at a low cumulative dose of the drug. These results, however, await confirmation in controlled studies. PubMed. Clin Exp Rheumatol. 2007 Jul-Aug;25(4):613-6.

     

    A randomized unblinded trial of cyclophosphamide CYC) versus azathioprine (AZ) in the treatment of systemic sclerosis. After treatment there was a statistically significant improvement in the modified Rodnan skin score, attack frequency of Raynaud's phenomenon, and erythrocyte sedimentation rate (ESR) in the CYC-group, but not in the AZ-group. PubMed. Clin Rheumatol. 2006 Mar;25(2):205-12. Epub 2005 Oct 14.


  2. Hello, nmh.

     

    Welcome to the Forums. I am glad you found us and hope you can learn something about your concerns which will help you find the treatment you need. Here is our page on En Coup de Sabre. From my brief scan, it does appear that this form of linear scleroderma is found in adults as well as children. I don't have any personal experience, but perhaps there are others who will share theirs.


  3. I laughed when I read your post, Amanda. I am pretty sure you were just kidding, but just to clarify, I believe microchimerism refers to fetal cells. On the same page Eos linked to (Fetal Cells and Scleroderma) is this article:

     

    Mothers And Offspring Can Share Cells Throughout Life. Cutting the umbilical cord doesn’t necessarily sever the physical link between mother and child. Many cells pass back and forth between the mother and fetus during pregnancy and can be detected in the tissues and organs of both even decades later. ScienceDaily. 05/08/08.

     

    They may never call or write, but somehow they always stay with you! :D


  4. Hi, eos. You really should have said, Hello. She might have been one of us. :D

     

    I have not had the same experience, but I have had many reality checks to do with signs of aging. Like when did people start giving up their seats to me on the bus? Or when a tiny silver-haired women, waved me in front of her getting onto the bus.


  5. Hi, Linda

     

    Yes, it is possible (and common) to have Raynaud's attacks on the feet as well as hands and even other parts of the body as you will find on our main Raynaud's Main Menu page. Numbness and pain in the feet may not necessarily be attributed to Raynaud's though, especially since you mention that you have problems with callused toes. Make sure you are wearing comfortable shoes when you are out walking and that your socks also fit well and are dry. If your feet are warm before you put your well-fitting shoes and dry, well-fitting socks on, they are more likely to stay warm. You may want to carry a pair of warm socks in your bag to slip on if you are wearing sandals and find yourself in a highly air-conditioned restaurant.

     

    I have had a lot of trouble transitioning from one season to another when it comes to shoes. :huh:


  6. I also have a problem with post nasal drainage and sometimes use an antihistamine during the season, too. Be sure to check with your doctor to make sure that the cough is caused by an upper airway allergy.

     

    Please note this warning found on our Treatments for Pulmonary Fibrosis page:

     

    Antihistamine Warning

     

    Symptoms - Lung and Airway Disorders. A warning about antihistamines and Lung Disorders. Antihistamines, which dry the respiratory tract, have little or no value in treating a cough, except when it is caused by an upper airway allergy. With coughs from other causes, such as bronchitis, the drying action of antihistamines can be harmful, thickening respiratory secretions and making them difficult to cough up. Merck.com.


  7. Hi, Jeannie

     

    Thanks so much for this. I look forward to your future instalments. I know it must be frustrating, especially to new members, to get used to how things work around here. Hopefully this will give us all a little insight into the process. It's easy to miss things in the first read of the guidelines in our excitement to get into the forums and post. I refer to them several times a week.


  8. Hi, Jaxs.

     

    This all sounds very frustrating. Since I have talked to you in chat sessions before, I know that you are from the UK, so some of the otherwise excellent advice you have received may not necessarily apply. For those who are not familiar with the NHS (National Health Service) protocols, I will explain briefly.

     

    Each of us signs on with a General Practitioner (GP) who oversees our general health needs. In smaller areas there may only be one or two doctors, in larger areas as mine, there may be several clusters made up of doctors and nurses in a health center which also houses some specialist services -- mine has x-ray services, a psychologist, hearing testing etc. When certain clinical criteria are met, the general practitioner will refer a patient to a specialist clinic, most of which are located in nearby teaching hospitals. It may take several months to be seen the first time, but once you are are signed on with that clinic, you continue to be seen routinely for the duration of your illness by the consultants at that clinic. You might be seen more frequently at first, then quarterly or even twice yearly. During that time, your specialist/consultant, corresponds regularly with your general practitioner who in most cases does all of the prescribing of medications. Blood tests specific to the specialty are done by the consultant's staff, other tests may be done by the general practitioner. All results are sent to the general practitioner.

     

    At the moment I am seeing my general practitioner every 8 weeks (or in between if required) and my rheumatologist every 4 months. I am also currently being seen at a Gastrology and Dermatology Clinic. While you may be able to change from one consultant to another within a clinic, you do not have many options when it comes to available clinics. All clinics are held to the same standard of care as defined by NICE (National Institute for Clinical Excellence). There are channels through which you can report complaints of negligence through the NHS itself.

     

    It is true that all clinics are converting over to computer records. My own General Practitioner has his monitor turned so I can see it and he pulls up copies of letters from the consultants, blood test results, etc. All the medications are on the computer and he might refer to it several times in the course of a visit.

     

    While it is not so easy to 'fire' a doctor and we don't have the option of self-referral, it is still necessary at times to stand up and be counted. I have found the most effective way to get through is to go in armed with written questions or bullet points and insist they get covered. They are not mind readers. I have written letters a few times in the last ten years. I address the letter to the head of the clinic involved and cc: my general practitioner and my patient file at each relevant clinic. They have been effective.

     

    You can search for NICE guidelines on specific illnesses and find out precisely what treatment plan is considered the standard of care to make sure you are receiving the appropriate treatment for your circumstances.

     

    I hope some of this may be useful to you, jaxs. Let me know if I can help.


  9. Hi, Irene. Good to hear from you. Your timing couldn't be better. I usually end up seeing my results after I am in a position to ask questions and by the next time I have forgotten them.

     

    You have formed your questions perfectly. Print out your post in list form and take it with you to your rheumatologist. Ask him to answer all of these points directly.

     

    I don't have any experience which will help you with any of this but here is our page on Antibodies for you to research further. I suspect you have already spent some time there, anyway. :D Let us know how your appointment goes.


  10. It's awfully hard not to want to tally every symptom we have to scleroderma. In many cases, however, even when the cause of a particular pain is not scleroderma, the effects can be exacerbated by it, such as lack of flexibility in the tendons.

     

    It is important that we bring up all symptoms that arise to the relevant doctors so we can get appropriate treatment, regardless of the cause. Some years back I had excruciating pain from plantar fasciitis. As it was explained by my podiatrist, the plantar fascia, which is fairly heavy duty connective tissue structure at the base of the foot, develops micro tears at the attachment points under the heels causing the pain. During rest, even sitting for an hour or so, the tears start to heal. Then when you stand, they tear again. I had to wear orthotic devices for 90 days whenever I put weight on my feet. Even in the shower I had to stand on a rolled handtowel to keep my arches in the same position.

     

    I noticed that the orthotics were made by the same people who make the sandals Jill referred (can't mention brand names here) to so I switched over to them and wore nothing else until just recently. In the winter I wore the closed in versions, ugly as they were. I never had any more problem with the plantar fasciitis, but I too have lost the fat pads (it tends to happen to many people with age). Through the past two winters I have worn boots with sheepskin lining and the cushioning is wonderfully supportive and comfortable.


  11. Hi, Krisplady

     

    I am so sorry to hear about your mother's long term problems, but I am glad you have found a place to vent and share your experiences with others in a similar situation. This forum has been an oasis for caregivers and family members as well as for those going through the disease itself. Let me welcome you to the forums with a big hug. If there is anything specific you'd like help with, just let us know. It is good that you have received good counsel on thinking of yourself in the long term and I wish you luck with your college work. In the meantime, many of us have found help in our Emotional Adjustment and Scleroderma pages -- a wealth of information there.