Cousin with CIDP after GBS

Caroline,

This must be a very difficult time for your cousin. He is lucky to have someone like you who can truly empathize with what he is going through, since you have had GBS yourself.

CIDP is a chronic, progressive form of GBS. Although it has it’s own unique problems, many of our members have found successful treatment regimes to allow them to keep living productive, happy lives. Like any chronic illness, it requires adjustments to lifestyle and attitude.

I encourage you to have your cousin contact us. Not only is the forum a great support system, it is an invaluable source of practical information about GBS and CIDP. Our contributors have many creative and useful ideas about how to manage recovery and the challenges of daily living.

Please tell your cousin that he’s welcome anytime, and we look forward to hearing more from you, as well.

Regards,

Suzanne

Hi Caroline, so sorry to hear about your cousin. CIDP is essentially just Chronic GBS, usually the onset is slower but not always. Anyway I hope he joins us on here if he can. Take care and please send him my best.

Jerimy

It may be worth reading the CIDP info on the UK site written originally by the reputed Professor Richard Hughes. It can be found at [url]http://www.gbs.org.uk/info/cidp.htm[/url] Especially helpful is the ‘Living with CIDP’ section.:rolleyes:

Caroline,

I used a simplified explanation of the difference between GBS and CIDP. Here is some better information for you from the Summer GBS Newsletter:

[B][FONT=arial][SIZE=5]What’s In a Name? Important Differences
Between GBS, CIDP and Related Disorders[/SIZE][/FONT][/B]
[SIZE=2][I]________________________________________________________________________

David S. Saperstein, M.D., Phoenix Neurological Associates, Phoenix, AZ[/I][/SIZE]

[FONT=arial][SIZE=2]This article will discuss the differences between Guillain Barre Syndrome (GBS) and related conditions. Recently I have seen cases where misunderstanding of these concepts led to less than ideal management. I have also frequently observed confusion about terminology among patients and physicians.

[/SIZE][/FONT] [FONT=arial][SIZE=2]GBS may also be referred to as acute inflammatory demyelinating polyneuropathy (AIDP). This emphasizes the acute nature of this disorder: symptoms come on abruptly and progress rather quickly. Symptoms stop progressing, often within 2 weeks, and usually not more than 4 weeks. After a period of weeks to months, patients then begin to experience improvement. Although the majority of patients with GBS will do rather well, not all patients will recover fully and may experience chronic weakness, numbness, fatigue or pain. Once symptoms stabilize, there is rarely any further deterioration.

[/SIZE][/FONT] [FONT=arial][SIZE=2]Chronic inflammatory demyelinating polyneuropathy (CIDP) produces manifestations similar to GBS, but there are important differences. Symptoms tend to come on more slowly and progress for a longer period of time. Patients may stabilize and recover, but then experience a return of symptoms in the future (this is referred to as the relapsing form of CIDP). Alternatively, patients may experience progressive CIDP wherein there is slow, continuous progression without a period of stabilization. By definition, if there is progression of symptoms beyond 8 weeks, the patient has CIDP. Patients with CIDP often need sustained treatment, but many experience complete remission or at least improve and stabilize on medication.

[/SIZE][/FONT] [FONT=arial][SIZE=2]A less well-appreciated disorder is subacute demyelinating polyneuropathy (SIDP). SIDP is defined by a progression of symptoms for more than 4 weeks but less than 8 weeks. In other words, the time frame falls in between that of GBS and CIDP. This is an uncommon but interesting group of patients. It is necessary to identify these patients because there can be important considerations regarding their treatment (see below).

[/SIZE][/FONT] [FONT=arial][SIZE=2]The most important reasons for distinguishing between GBS, SIDP and CIDP are to help anticipate outcome and to determine the optimal therapy. Patients with GBS are usually treated with a course of either of two therapies: intravenous immunoglobulin (IVIg) or plasma exchange (PE). IVIg and PE are equally effective (and there is not an advantage to using both treatments). Typically, a single course of treatment is given, usually as soon as possible after diagnosis. The goal of treatment is to hasten improvement. Patients with GBS will improve without treatment; IVIg or PE just accelerate recovery. As discussed above, the full extent of recovery will not occur for many months (or even years). This is an important point that is often not appreciated. Some GBS patients certainly do improve quickly and dramatically after being treated with IVIg or PE. However, most do not. Therefore, repeat courses of IVIg or PE or treatment with a different therapy are typically not indicated.

[/SIZE][/FONT] [FONT=arial][SIZE=2]A number of GBS patients will have permanent symptoms. These symptoms are from nerve damage. IVIg and PE treat inflammation of the nerve, but do not help with nerve recovery. Nerve recovery can occur, but takes time. Persistent symptoms do not mean a person has CIDP. CIDP is diagnosed when there is continued [I]progression[/I] of symptoms (not continued [I]persistence[/I] of symptoms).

[/SIZE][/FONT] [FONT=arial][SIZE=2]In contrast to GBS, CIDP patients are treated with repeated courses of IVIg or PE (or daily doses of other medications such as prednisone, azathioprine, cyclosporine or mycophenolate mofetil). Without sustained treatment, patients with CIDP will usually relapse and continue to worsen. Over time, the amount of medication can be decreased in many patients and, in some patients, treatment can be discontinued entirely.

[/SIZE][/FONT] [FONT=arial][SIZE=2]Finally, we come to SIDP. Treatment is usually as for GBS: a single course of IVIg or PE. This will be sufficient for many of these patients. However, some SIDP patients are actually CIDP patients who got treated before they could declare themselves by progressing for 8 or more weeks. If they are not watched closely, patients with SIDP can quickly deteriorate. These patients will need more sustained treatment, as in the case for CIDP.

[/SIZE][/FONT] [FONT=arial][SIZE=2]Now that I have defined the syndromes, I would like to give some examples of how incomplete appreciation of these disorders can lead to misunderstandings regarding therapy. I have seen several patients with SIDP diagnosed with GBS and treated with a single course of IVIg or PE. That is appropriate, but then when these patients subsequently worsened after a few weeks or months, they were either not re-treated or they were repeatedly treated with just a single course of therapy. They would improve and then worsen again and again. In such cases, continued treatment is needed to stabilize these patients (such as IVIg administered every month). A different error is to give a GBS patient IVIg or PE to treat chronic, stable, persistent symptoms. These treatments will not help. Recall that the persistent symptoms are due to damaged nerves. At the current time, we do not have therapies to restore the damaged nerves (but there are medications that can be used to help nerve pain).

[/SIZE][/FONT] [FONT=arial][SIZE=2]Hopefully this review has helped clarify the distinctions between GBS, SIDP and CIDP and illustrate the differing outcomes and treatment approaches for these disorders. [/SIZE][/FONT] [SIZE=2]
[B]
Article from the Summer 2006 GBS Newsletter[/B][/SIZE]

Caroline,

I had a ruptured disc at L4/L5 and a bulging disc at L5/S1

My neck is a mess. ruptured and rep[leced at c6/c7 messed up at several other levels.

Sometimes you just have to deal with it and go on. I am able to get up and get around still, so IO bless every day. IU hope you can keep your cousin encouraged and cheered up a bit. Get him to do whatever he can. Any successes are good successes. Some successes are better than no successes. Get him to do something. A little success goes a long way.

A smile goes a long way. I’m cheering for him.!!!

Good Luck

Dick S

Your very welcome Caroline, hope to get to know your cousin when he is able to begin posting.

Jerimy

Jerimy,

Okay, you know of me… I have recently been wondering if I am into a CIDP stage from GBS 10 years ago. The article you posted is too hard to read – this may sound really stupid/silly, but I am very tired at work at almost 5pm (time to go home) and can barely comprehend anything over 2 syllabyles (don’t think I spelt that one right).

Can you put this into some REAL simple terms for me? Or do you probably agree I have gone into CIDP with having so many leg and back pains? And get to the point of fatigue where I cannot ‘think’ logically – just so dang tired and want to go home and go to bed.

Not that having CIDP would make any difference in my life…

Hi Chrissy, yes I “know” you 🙂

That article I posted is pretty intense. From what I know about GBS, CIDP etc it sounds to me like you have residuals, not CIDP. That’s just my opinion but the length of time since your onset to your current symptoms seems more like GBS residuals then a relapse. Maybe Gene or someone else can correct me if I am wrong. Ali is someone who also had GBS like 20 years ago and has residuals she deals with on a constant basis, hopefully she will see this and give her opinion. Hope that helps.

Jerimy

Jerimy,

Thanks for your ‘opinion.’ I think you are probably right as I was sooo tired yesterday and went home and got into bed. 12 hours later I felt much better. I suppose if it was CIDP I wouldn’t recover so quickly. Dang, that fatigue can be some rough stuff.

Chrissy,

Jer knows this already, but my computer crashed a few weeks ago and I lost everything! All the telephone numbers, addresses etc that were kept in the computer contact list are gone….. never to return:(. Of course I neglected to back it up, and a lot of those were never loaded onto my cell phone, I hate to say this Chrissy, yours is one of those. Please call if you need to talk.

Ali – Thanks so much for your continued support 😀

This time of year is really hard… first year without my father. My brother and sisters feel the same which does help to know I am not alone in my grief. But I know by now to take extra care of myself – because no one else will – I have been trying to get a good 12 hours of hanging out in my new comfy bed and at least 9 to 10 hours sleep. I did too much yesterday and have the tingly feet, numb arm, etc. today and am so looking forward to getting into bed immediately after work.

Jerimy – thanks for everything you do too 🙂

Thanks Chrissy that means alot to me 🙂