Ausvoltz
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September 11, 2020 at 3:06 pm
Sorry Walter K for slow reply, I am allergic to Penicillin which was how I found out that that I was also allergic to Prednisone. So I have not had any Prednisone. They say you should feel more better after ivig treatment but I haven’t experienced it in the way they say, After a period of 2 years there is some slight change.
I am though getting slow increase in drop foot more left side pain in feet and muscle weakness in lower leg.
It seems like I go in cycles of some wellness but relapse bring more long term issues.
I live in the 2480 area.September 2, 2020 at 2:37 pmThanks Ron for the great words of encouragement.đđ
September 2, 2020 at 2:35 pmHi Walter K, who is your neurologist and immunologist? My neurologist is Dr Richard Adams at Southport, I don’t see a immunologist.
I have had a phone consultation with my neurologist ever 6 months but i find face to face easier.
As for Prednisone it makes me very depressed suicidal on small doses.
Thanks for replying and the information.June 21, 2020 at 4:15 pmJune 21, 2020 at 4:12 pmSorry the link I posted doesn’t take you straight to the info so copied it.
From a reply by Jim-LA a moderator to this site.
I have no doubt that a few have gotten relief from CIDP just from IVIg or PE, but I think that would be the exception.CIDP is an Autoimmune condition whereby our systems make cells to attack invading organisms. Each of us has had encounters with foreign antigens over the years and have built up defenses against them. These experiences make all of our Autoimmune systems a bit different. As a result of CIDP and related diseases, some of us have ended up with âTâ cells that donât properly recognize âselfâ. A discussion of the cell types that may be involved is here:
New- CIPD and Central Nerves/ Cranial
Another discussion thread which addresses key treatment options and how they might work for some of us can be found here:
Your top signs that your CIDP is coming back/getting worse
Please look into treatment with Rituximab to help rid yourself of the chronic form of CIDP, it has worked for me. The threads linked in the following discussion may be worth your time to read:
Rituximab (Rutixn)
June 21, 2020 at 4:06 pm
The short answer is no. The link above is good.June 17, 2020 at 7:24 pmMyelopathy is an injury to the spinal cord due to severe compression that may result from trauma, congenital stenosis, degenerative disease or disc herniation. The spinal cord is a group of nerves housed inside the spine that runs almost its entire length. When any portion of the spinal cord becomes compressed or constricted, the resulting symptoms are known as myelopathy.
June 11, 2020 at 2:31 amThe following article is written by Jim-LA a moderator on this forum and a fellow CIDP
CIDP is where the autoimmune system remembers how to make antibodies that attack âselfâ. The condition can lay dormant for years before being triggered by some virus like Shingles or a flu shot. When triggered, our systems can produce antibodies that go on the attack to remove invading organisms from our body. In doing so, they can attack parts of the body itself, usually focusing on soft nerve fibers such as Myelin. This causes weakness and loss of muscle control, burning and shaky muscles.
Here is a summary of the types of cells involved:
⢠B lymphocytes (B cells) are antibody-producing cells that are essential for acquired, antigen-specific immune responses. Fully mature B-cells are called plasma cells that produce antibodies, immune proteins that target and destroy bacteria, viruses and other ânon-selfâ foreign antigens.
⢠T lymphocytes (T cells): Some T cells help the body distinguish between âselfâ and ânon-selfâ antigens. Others initiate and control the extent of an immune response, boosting it as needed and then slowing it as the condition resolves. Other types of T cells directly attack and neutralize virus-infected or cancerous cells.
⢠Natural killer cells (NK cells) directly attack and kill abnormal cells such as cancer cells or those infected with a virus.IVIg stops your autoimmune system from making more bad antibodies, but does not remove the bad antibodies already released into your system, these can continue to do damage, especially the ones that have travelled deep within your system. Plasma Exchange (PE) removes the bad antibodies but does not stop your body from producing more. I think, depending on the severity of individual cases, that treatment should consist of 3 days of PE followed by 5 days of IVIg (or SCIg).
One of the best long-term treatments for chronic PN disorders is an immunosuppressant drug. These drugs help suppress the autoimmune system from producing bad antibodies over time. These are strong drugs and may have side affects for some. Prednisone, CellCept, and Rituximab are some of the more popular drugs being used. However, when a CIDP attack reoccurs, IVIg or Plasma Exchange is usually given to stop the initial severity of the attack.
It sounds like the bad antibodies are still very active inside you. That could account for the numerous symptoms you have described. I experienced all that stuff when my disease was still very active. I had a combination of GBS/CIDP/MFS. The MFS piece seemed to take control of my head; the GBS piece had its way with my extremities. The symptoms you describe bring back awful memories.
For me, IVIg did nothing. I had it for several weeks and my symptoms continued to worsen. It wasnât until I started PE that I started to return to a more normal state. The symptoms began to diminish following PE. If you havenât been treated with PE perhaps that is worth discussing with your neurologist⌠right away!
June 10, 2020 at 4:45 pmHi Dana my sister has progressive MS and had HSCT it hasnât worked.It doesn’t work well for people with progressive MS who no longer show signs of inflammation and who have high levels of disability.
May 17, 2020 at 3:01 amThe redness for me was blistering and red scales Benadryl cream didn’t do anything, I have 20 cm diameter light scar marks on my stomach from the treatment my wife calls them crop circles.
May 16, 2020 at 1:52 amI was on Privigen every 2nd week for 18 months then move to Hizentra SCIG. You do have lumps until your body moves the fluid on, the very small needles are subcutaneous which means the fluid is injected between the skin and flesh layer over time you developed what is called a pocket between the two layers which is harmless.
I wish I was able to continue on this, but I have a crazy immune system I developed a large red rash around the sites and belly button. I went back on to Privigen, which I had an allergic reaction, so now I have to have antihistamines before each infusion and two aspirin due to it increasing my blood pressure during the infusion. The neurologist and hematologist say I am a rare species or their problem child đ
That’s me, but I have heard a lot of really good experiences and happy people just like harryswopeMay 4, 2020 at 5:08 pmApril 5, 2020 at 3:28 pmI think this question is like any other I believe question very broad so broad that even being cut could be classified as surgery due to it being a trauma to the body.
As for Frances Sakanai its more likely flu shot,tetanus or botox just because you’ve had something many times doesn’t mean your body won’t react to it in a bad way.March 24, 2020 at 3:49 pmYour question is a very broad one.
Hepatitis means inflammation (swelling and pain) of the liver. The liver is important for a range of functions in the body. These include regulating metabolism, making proteins, storing vitamins and iron, removing toxins and producing bile.If the liver doesnât work properly, it can cause serious illness or sometimes even death. Hepatitis may be caused by infection, viruses, chemicals, alcohol and other drug use and other factors. Chronic hepatitis means ongoing inflammation of the liver, irrespective of the underlying cause.
The various forms of viral hepatitis are named after different letters of the alphabet. These include hepatitis A, B, C, D and E. They are also sometimes called hep A, hep B, hep C, and so on. While all these viruses affect the liver, they are spread in different ways and have different treatments. The most common types of viral hepatitis in the world are hepatitis A, B and C.
Other viruses may also cause hepatitis, such as the yellow fever virus and the virus that causes glandular fever.
March 14, 2020 at 7:49 amThis is on the gbs-cidp site
https://www.gbs-cidp.org/a-statement-from-the-gbscidp-foundation-regarding-the-covid-19/
