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TOPIC: sarcoidosis

Re:neurosarcoidosis 9 years 1 month ago #4796

  • suzan
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this site gives a good overview of sarcoidosis, below is copied treatment options currently in use.

xx suzan xx

www.stopsarcoidosis.org/sarcoidosis/treatment.htm

TREATMENT
The treatment of sarcoidosis often depends on the specific needs and symptoms of each patient. Because the symptoms and severity of sarcoidosis may vary a great deal among different people, it is important to have a thorough medical evaluation to ensure proper diagnosis and treatment are received.

How is Sarcoidosis Treated?
Sarcoidosis granulomas (masses of inflamed tissue, or lumps) result from a response of the immune system. Most medications used to treat sarcoidosis suppress the immune system. This can leave a person more likely to get sick from an infection, and this risk must be considered in making treatment decisions.

Removing granulomas is not an option. Surgery does not treat the underlying problem that causes the granulomas. In fact, granulomas can form around surgical scars.

Different treatments will work better for different people, and sometimes more than one is used. In some cases, no treatment is needed. But, for some patients, intense treatment is required, especially if organs like the lungs, eyes, heart or central nervous system are affected. Good communication with your doctor may mean that your treatment plan is more successful. Asking questions about the selection of medications and any possible side effects, as well as reporting any changes in your symptoms are very important. Remember the FSR PATH to good health when talking to your doctor!

For more detailed information on how the following drugs work, how to take them and possible side effects, please refer to the package insert. These are available on-line from the drug manufacturer and at pharmacies.

CoRTICOSTEROIDS
Corticosteroid medications are considered the first line of treatment for sarcoidosis that requires treatment. Corticosteroids are also called glucocorticoids or steroids, and there are many different medicines within the corticosteroid class of drugs, including Cortisone, Prednisone, and Prednisolone. These powerful drugs effectively reduce inflammation throughout the body in most people, thereby slowing, stopping, or even preventing the organ damage that sarcoidosis can cause. Corticosteroids can be taken alone or in combination with other sarcoidosis medicines. Neither the dose (amount prescribed) used for treating sarcoidosis nor the duration (length of time) are standardized. Most doctors will prescribe a moderate to high dosage of corticosteroids initially, but they will try to reduce the dosage gradually as symptoms are brought under control because high dosages of corticosteroids and/or long-term treatment can cause serious side effects. These side effects include mood swings, weight gain, acne, difficulty sleeping at night, and, when taken for a long time, problems such as osteoporosis, diabetes, high blood pressure, cataracts, glaucoma, and other serious conditions. Many people with chronic sarcoidosis will need ongoing corticosteroid therapy for a long time, possibly a lifetime, so the lowest dosage that still suppresses inflammation is desirable. For more information about corticosteroids and bone loss, request the FSR brochure, SOS: Your Bones Need Your Help.

In addition to prescribing corticosteroids in pill form to treat the whole body, doctors sometimes prescribe corticosteroid injections for skin sarcoidosis and corticosteroid eye drops for uveitis. Various studies have tested using corticosteroid inhalers to treat sarcoidosis lung problems, but results have been mixed. (Visit the Research News Archive for links to a March 2002 review of randomized trials using corticosteroids.)

Antimalarial Drugs
Hydroxychloroquine (brand name: Plaquenil®) and Chloroquine (brand name: Aralen®) are best known as malaria treatments, but they are also sometimes used to treat inflammatory diseases such as rheumatoid arthritis and lupus. As a treatment for sarcoidosis, these drugs are most likely to be effective in people who have skin symptoms and a high level of calcium in their blood. Antimalarial drugs can irritate the stomach. They can also cause serious eye problems, particularly chloroquine. If you take chloroquine, you should have your eyes examined every 3 months. If you take hydroxychloroquine, you should have them examined at least every 6 months. In most cases, hydroxychloroquine and chloroquine are not recommended during pregnancy.

Immunosuppresant Drugs
Methotrexate (brand names: Rheumatrex®, Trexall®) was first used widely to treat cancer, and, in lower dosages, it is used today to treat inflammatory diseases such as psoriasis, rheumatoid arthritis, and lupus. It has been an effective treatment for some people with sarcoidosis, and one group of researchers recently found that two-thirds of sarcoidosis patients responded to methotrexate treatment alone, while 80 percent responded when it was combined with low-dosage corticosteroids. Methotrexate has side effects. It can cause nausea, mouth sores, and/or hair loss, and, because it weakens your immune system, it can also increase your risk of getting infections. Rarely, methotrexate causes an allergic reaction in the lungs, but that reaction stops when you stop taking the drug. The most serious potential side effect of methotrexate is liver damage, but your doctor can check your liver function regularly with various laboratory tests to make sure it is functioning properly. Most doctors recommend that you stop drinking alcohol while taking methotrexate because alcohol might increase the risk of liver damage. Women who are pregnant or breastfeeding should not take methotrexate because it can harm the baby. Taking folic acid supplements or eating more folic acid in your diet can alleviate some of the side effects of methotrexate. (Visit the Research News Archive for links to a March 2000 article on a trial using methotrexate.)

Mycophenolate mofetil (brand name: CellCept®) was first used widely as a treatment for people who had received organ transplants. Today, doctors often prescribe it to treat a number of autoimmune and inflammatory diseases, including rheumatoid arthritis and lupus nephritis. Several very small studies have shown it to be effective in treating sarcoidosis. Side effects can include sore throat, fever, tiredness, tingling or burning in one part of the body, and weakness. Mycophenolate might increase your susceptibility to infection and your risk of developing certain types of cancer. Women who are pregnant or breastfeeding should not take this drug.

Azathioprine (brand name: Azasan®, Imuran®) is most commonly used to prevent the rejection of kidney transplants and to treat inflammatory diseases such as rheumatoid arthritis and inflammatory bowel disease. What little research has been done on the subject shows that azathioprine is roughly as effective as methotrexate in treating sarcoidosis. The side effects of azathioprine include upset stomach, stomach pain, mouth sores, muscle aches, flu-like symptoms, yellowing of the skin or eyes, and blurred vision. Like methotrexate, azathioprine can increase your risk of getting infections. Women who are pregnant or breastfeeding should not take this drug.

Cyclophosphamide (brand names: Cytoxan®, Neosar®) is best known as a cancer treatment, but it is sometimes prescribed for sarcoidosis. It is more toxic than either methotrexate or azathioprine , however, so most doctors only prescribe it when other medications have not worked and a person’s symptoms are very serious. Preliminary and case studies have shown that cyclophosphamide appears to be effective for some people and is perhaps particularly useful in cases where brain and nervous system symptoms have not responded to other treatments. Its side effects can include nausea, weight loss, hair loss, acne, darkened and thickened skin, mouth blisters, and fatigue. Taking the drug increases your risk of developing infections and certain cancers, particularly bladder cancer. Women who are pregnant or breastfeeding should not take cyclophosphamide.

Potential Treatments
A number of new treatments as well as older medications that have not yet been tested much in people with sarcoidosis might hold promise as sarcoidosis treatments. Researchers are particularly interested in treatments that target specific parts of the immune response. You should tell your doctor if you are pregnant, plan to become pregnant, or are breast-feeding and taking any of these drugs.

Infliximab (brand name: Remicade®) was developed to treat Crohn’s disease, one of the inflammatory bowel diseases. It has since been approved for several other inflammatory diseases, including rheumatoid arthritis. It is delivered by infusion in a medical setting. Researchers recently found infliximab to be effective in reducing the sarcoidosis symptoms of people who did not respond to other treatments, but these results came from small, short-term studies. Infliximab can cause a variety of side effects, including chest pain, fever, hives, trouble breathing, nausea, headache, abdominal pain, and sore throat. It also increases the risk of infection and slightly increases the risk of certain types of cancer.

Etanercept (brand name: Enbrel®) is in the same class of new inflammatory treatments as infliximab. However, it is delivered by injection, not infusion, and you can give it to yourself at home. It was developed to treat rheumatoid arthritis and has since been approved for a variety of other inflammatory diseases. Researchers have tested it, too, in small studies of people with various sarcoidosis symptoms, but results to date have been mixed and less promising than for infliximab. Etanercept can cause many of the same side effects as listed above for infliximab. It, too, increases the risk of infection and slightly increases the risk of certain types of cancer.

Adalimumab (brand name: Humira®) is in the same class of treatments as etanercept and infliximab. It is delivered by injection, and you can give it to yourself at home. Adalimumab has been approved to treat rheumatoid arthritis and several other types of arthritis. Its value as a treatment for sarcoidosis is unknown because it has not been tested in clinical trials with people with sarcoidosis, but some doctors prescribe it for their sarcoidosis patients. It can cause many of the same side effects as described above for infliximab and etanercept. It also increases the risk of infection and might slightly increase the risk of certain types of cancer.

Thalidomide (Thalomid) is used to treat certain skin problems, and researchers have been interested to see if thalidomide improves sarcoidosis. In very small studies it was effective in some people who had skin and lung involvement. Side effects associated with thalidomide include drowsiness, dizziness, slowed heartbeats, rashes, and numbness or tingling in the hands or feet. More studies are needed to determine whether thalidomide might be useful for treating sarcoidosis. The drug will cause severe birth defects, so women who are pregnant, who are thinking of becoming pregnant, or who are at risk for becoming pregnant should not take it. Women who are breastfeeding also should not take thalidomide.

Pentoxifylline (brand name: Trental®) is used to reduce leg pain caused by poor blood circulation. Because of its anti-inflammatory effects, researchers are interested to see if pentoxifylline is useful as a combination treatment that allows for a lower dosage of corticosteroids. , Pentoxifylline’s side effects include dizziness, headaches, nausea, and stomach discomfort. More large-scale studies are needed to determine whether pentoxifylline has a role in sarcoidosis treatment.

Tetracyclines, such as minocycline and doxycycline, are antibiotic medicines used to control a variety of infections and acne. Very small studies have shown that they might also improve the skin symptoms of sarcoidosis. No clinical studies have shown that these drugs improve sarcoidosis that affects the lungs or any other organs. The side effects of tetracyclines include increased sensitivity to the sun, stomach cramps, and diarrhea. More research on the efficacy of tetracyclines for sarcoidosis is needed.

ORGAN SPECIFIC TREATMENTS
Depending on how sarcoidosis affects you, you might need to treat specific symptoms of the disease on their own, with medications besides corticosteroids or the corticosteroid alternatives mentioned above. Below are a few of the most common treatments for various types of sarcoidosis.

In patients with sarcoidosis affecting their heart, heart drugs may be given to improve the heart’s pumping ability or to correct a disturbed heart rhythm. If a rhythm disturbance is severe, it may be restored to normal by use of a cardiac pace-maker or defibrillator. Lung or heart transplantation may be indicated in the case of severe pulmonary or heart failure.

Monitoring Treatment
Patients with sarcoidosis need to have their condition checked during and after treatment. Those who do not receive treatment also need regular checkups, since symptoms can develop later. Patients should work with their sarcoidosis specialist and regular physician to develop a schedule of periodic examinations and laboratory tests.

The follow-up examination usually includes a review of symptoms, a physical examination, a chest x-ray, breathing tests and laboratory blood tests. How often these examinations and tests are done depends on the severity of the symptoms and the organs affected at diagnosis, the therapy used and any complications that may develop during treatment.

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Re:neurosarcoidosis 9 years 1 month ago #4797

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research news re sarcoidosis:-

www.stopsarcoidosis.org/news/researchnews.htm


including the following on genetics...

1 Mar 2007 Genetics of Sarcoidosis. Semin Respir Crit Care Med. 2007 Feb;28(1):15-21.

Research increasingly suggests that sarcoidosis results from an interplay of environmental and genetic factors. Although the recently completed ACCESS (A Case-Control Etiologic Study of Sarcoidosis) study was not able to definitively identify a single cause for sarcoidosis, it did yield important findings regarding familial and environmental risks that have advanced our understanding of this disease. Family clustering and differences in racial incidence of sarcoidosis support an inherited susceptibility to sarcoidosis. Siblings of patients with sarcoidosis have about a fivefold increased risk of developing sarcoidosis. In addition, two recent genome scans have been reported in sarcoidosis. One in African Americans reporting linkage to chromosome 5 and the other in German families reporting linkage to chromosome 6. The author concludes that advances in genotyping and statistical analysis are helping to clarify the genetics of sarcoidosis

xx suzan xx

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Re:neurosarcoidosis 9 years 1 month ago #4825

Suzan, that is a lot of info, I hope it helps others affected by sarcoidosis. Lets not forget one of the most important aspects of this or any disease, ATTITUDE!!!!!!!! It has been hard for me, and I am sure all of us, to try and keep a positive attitude. Being stong in the face of any health issues
can be difficult, but i am convinced that those that fight and refuse to give up have better results than those that don't. We all have bad times, but at the end of it all you have to have goals and you must do your best to reach them. Thanks for people like Suzan, who teaches by example.

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Re:neurosarcoidosis 9 years 1 month ago #4836

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I think..knowing your a babe-magnet helps as well Mark xxxx LOL ;) :whistle: :whistle:

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Re:neurosarcoidosis 8 years 11 months ago #8793

  • suzan
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heres something i saw on the web...

from yahoogroups neurosarcoidosis mail
Liver sarc can cause some water retention--- and the inflamation in the joints and ligaments are part of sarcoidosis- -- not usually caused by the liver issue. It's just part of the overall systemic inflammation.
My experience has been that when I'm retaining fluid-- I'm dehydrated. Our body is telling us that it thinks we aren't going to get enough fluids in-- so it's going to save some of what we do drink -- in bad places.
Seriously, you should be drinking at least 2/3 of a gallon of water daily, that's about 5 Liters for those of you that aren't on US measures-- and the first few days, you'll not only blow up with extra fluid in your hands and feet, but as soon as your body sees that you aren't depriving it of water, then you start peeing. Within a day or two after the great pees, your urine should be virtually clear, or very, very pale yellow.
You will also find that the inflammation in those joints and ligaments and muscles is so much better! The joints should \"float\" in synovial fluid, but if you aren't getting enough fluids-- you get the compression and toxic effect of the fluid--as it's not getting flushed out and replaced with the right electroylytes to keep it balanced.
How are your Liver enzymes--- do your docs order LFT's? (Liver Function Tests). This could tell us alot about what is going on -- as there are certain signals (High Alkaline Phosphatate) levels are significant for sarc involvement, but it can also be high if you are dehydrated. Remember, summer requires even more deligence in hydration than even winter--so drink up-- get the Milk Thistle, (or order LivaTone online) and help that liver to detox.



5litres sounds like a lot..hope kidneys can cope with that...i dont know much about fluid intake.....but maybe it can help??

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sarcoidosis petition 8 years 6 months ago #17036

  • suzan
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please support this petition :

petitions.number10.gov.uk/sarcoidosisaware/


from:
Visit U.K. Sarcoidosis Information and Support Group. at: sarcoidosissupport.ning.com


:)

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Re:sarcoidosis petition 8 years 6 months ago #17075

great petition, I can't sign as I am that crazy yank. Miss you Suz. Hope things are getting along ok for you.

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Re:sarcoidosis petition 8 years 6 months ago #17153

  • suzan
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:) :) :) nice to see you here again mark..:) ....been missing you too...:) ....am ok thanks.....not sure if my weariness is down to the sarcoid or just cos im getting old!!


why not come and chat in chitchat forum..:)

www.ablehere.com/component/option,com_jo...nc,showcat/catid,22/


be nice to see you there too...:)

suz xx

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Re:neurosarcoidosis 8 years 4 months ago #20496

It seems variable.

I worked with someone who suffered probably starting during the 1980s.

He was perhaps lucky and it didn't do too much major damage. Today he is semi-retired and gets by well enough. Mostly spinal problems and pain from that.

Treatment, there wasn't anything, just pain killers and hope it burns out.

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Re:neurosarcoidosis 8 years 4 months ago #20642

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yes my neurosarcoid started back in the 80s too.....then there wasnt much awareness of sarcoid, let alone neurosarcoid......my treatment then was with high dose steroids and also other antiinflammatories like methotrexate......it was, and still is a trial and error affair to get the sarcoid under control , and very much is geared to individual response.


these days the medical proffession is becoming more aware of sarcoid, but still not aware enough....hence the petition listed above..........sarcoid can cause permanent scarring of whatever organ involved, and it is essential to get the inflammation under control to minimise damage....also it mimics other illnesses, and is easy to misdiagnose a person, when in fact they do have sarcoidosis.




tim c...yes it is extremely variable...your friend was lucky, he has got through it with just painkillers.....steroids have been the first line of attact for some time now..;) :)

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