Anyone short of breath?

    • Anonymous
      October 30, 2010 at 11:34 am

      I was diagnosed with CIDP in February of this year. Currently I am receiving IVIG about every three weeks, and I am taking 50mg of Imuran and 20mg of Predisone daily.

      My strength has been pretty good, but for about the last month I have had problems with being short of breath. Just climbing one flight of stairs, or walking across a parking lot, makes me very out of breath.

      My neurologist says that this is not a symptom of CIDP, and is not a known side effect of the medications. He recommends that I see a cardiologist, and I am in fact making arrangements to do that. But, I saw a cardiologist just about six months ago, and he did pretty extensive testing, including a stress test. At that time, he gave me a clean bill of health. It seems odd to me that something would come up this quickly.

      Has anyone else had this problem, and had it related it to the CIDP or medication?

    • Anonymous
      October 30, 2010 at 12:24 pm

      The only thing I can think of causing the shortness of breath might be a chest infection. When my husband had Imuran added to his IVIG regime, he got pneumonia. Do you have any fever, muscle/back aches? Hubby got fever and back ache.
      Laurel

    • Anonymous
      October 30, 2010 at 2:13 pm

      CIDP can cause shortness of breath. If it effects the autonomic system, the nerves that control breathing may be effected. There can be demyelination of the phrenic nerve, although I imagine other nerves that are involved in respiration could also be effected.

      It is rare, but it happened in my case. It was initially misdiagnosed as panic attacks. Since heart problems can cause shortness of breath, you also need to have that checked out with the cardiologist.

    • Anonymous
      October 30, 2010 at 2:41 pm

      I also have a problem with being short of breath. Of course the neurologist said is was not CIDP…:(

      The bottom line is that the doctors keep pointing fingers at each other saying it not in the area and no one has come up with the reason. I have notice one thing that may help explain part of the problem. I have felt short of breath when I was on O[SIZE=”1″]2[/SIZE]. The O[SIZE=”1″]2[/SIZE] stats were at 100%, I was breathing freely, and yet I “felt” short of breath. There was something messed up with the way my mind was interpreting signals that were being sent to it. That didn’t explain all of the problem because there are many times when I am short of breath from going up a flight of stairs etc. it just add to the fun of trying to find out what’s going on.:rolleyes:

    • Anonymous
      October 30, 2010 at 5:17 pm

      A couple of things might be causing your shortness of breath. I became short of breath when I was on steroids, could barely walk up one flight of stairs or across the room. I was retaining fluid and some of it was settleing in my lungs. A side effect of steroids can be congestive heart failure, too. 20 mg is not that high of a dose, but I didn’t start feeling better until I got down to 10 mg/day. Thankfully, I’m completely off steroids.
      Also, have you had a CBC (blood count) checked lately? If your hemeglobin is low it can make you feel short of breath because insufficient oxygen is being delivered to your organs. IVIG suppresses my blood cell production, (I get 25mg 2x/week.) So, now I see a hematologist, get a weekly CBC, and a Procrit injection for a hemeglobin less than 10. I feel much better, have more energy, and can continue my IVIG.
      Hope you get it sorted out soon. It’s hard enough dealing with the basic fatigue, being short of breath, too, makes things much harder.:)

    • Anonymous
      October 30, 2010 at 5:46 pm

      Jim,
      Your oxygen sats can read 100% even if your hemeglobin (Hgb) is low. (I’m a repiratory therapist.) That’s just telling you that the Hbg in your blood is fully saturated, but if you don’t have enough Hgb, sufficient oxygen can’t be delivered to your tissues. Your body responds by trying to get more oxygen, so you feel short of breath.
      When I was getting IVIG 4 consecutive days a month, I had some trouble with low Hbg, but it would build back up before my next round of treatments. When I started getting it 2x/week, it became a real problem.
      I don’t know if that’s what’s causing your shortness of breath, but it might be worth considering. 🙂

    • Anonymous
      October 30, 2010 at 7:08 pm

      Sally,

      Thanks for the tip, I check it out. Right now they are trying to find out why there is blood in my urine. I tried to tell them it was from drinking to many Bloody Mary’s [hold the vodka] but they are not buying it.;)

    • Anonymous
      October 31, 2010 at 12:14 am

      Had read here and told by my neuro that CIDP can affect the autonomic system. I don’t have panicky breathing but hard to breath times especially when fatigued.

      Have been some older posts on this and most said it was due to nerve damage.But more than a few are experiencing this.

      Check for these posts in the Search mode on top right hand of page. I entered “breathing”.

    • Anonymous
      October 31, 2010 at 8:28 am

      I also have some breathing problems, don’t have stamina when doing anything aerobic. I noticed it started when on Prednisone, but have been off that since May ’10. I push myself to regain my stamina, and for three weeks after my IVIG feel great, but going into week four (I get IVIG once a month) I start feeling like I can’t breath again. Hope this info helps.

      Dawn

    • GAT
      October 31, 2010 at 9:04 pm

      The week that I first started feeling the effect and before dianosis I also had a bad shortness of breath. Went to Pumotoligist and said had ashma. Went to Neurologist and said I had CIDP. Both said no relationship. Just to much related for me. Again just funny stuff we deal with.

    • Anonymous
      November 1, 2010 at 6:26 am

      I agree that you could have anemia (low red blood cells or oxygen carrying part of the blood) which could be from “chronic” disease or from medications. You should get a CBC (complete blood count) blood test. More likely, though, the shortness of breath is from weakness due to the steroids and to the CIDP. This does not necessarily mean that the CIDP is “flairing”–just that it makes people weak and that sometimes another thing on top of that seems worse. 20 mg of prednisone is not “that much”, but the effects on the body depend on how long you have been on it and what doses you were on before (cumulative dose).
      WithHope for a cure of these diseases

    • Anonymous
      November 4, 2010 at 12:26 pm

      Since getting diagnosed with CIDP in 1992, I have experienced shortness of breath when I get very tired/fatigued. I did not have this issue BEFORE I got CIDP. I assume it’s related, even though medical doctors seem to disagree. Since nerves that control the breathing muscles are part of the peripheral nervous system, not sure how doctors can be so sure it’s not related. I agree that people should get other possible causes checked out, but in my case I am assuming some permanent nerve damage from the original CIDP episode.

    • Anonymous
      November 4, 2010 at 4:13 pm

      Thanks. I had a chest X-ray, and it was negative, and I don’t have any other symptoms. But it is something to think about.

    • Anonymous
      November 4, 2010 at 4:14 pm

      Thanks for the reply. I get a CBC every time I get IVIG, but all I ever look at is the platelet count, because Imuran is known to reduce platelets. I think my doc would have caught it if the hemoglobin was down, but I will ask him about it.

    • Anonymous
      November 4, 2010 at 8:49 pm

      what is Iurman? i haven’t heard of it.

    • Anonymous
      November 5, 2010 at 2:26 pm

      This is my first post! 🙂 I’ve had CIDP since ’75 but have been in (mostly)in remission for 30+ years. Now I have CIDP, lupus, Sjogren’s, etc.

      I keep complaining about shortness of breath. I’ve had lung capacity tests and ultrasounds, and various heart tests. They are all clear. My neurologist has mentioned asthma as a possibility. I believe it is fatigue of the breathing muscles. All my other muscles are fatigued so it makes sense…

    • November 6, 2010 at 2:29 am

      I would agree with Rosemary. A common symptom of CIDP is fatigue so it would make sense that if you fatigue easily then it would leave you short of breath. It does in my case, even with mild exercise.
      I too was diagnosed with having panic attacks, given breathing exercises then sent home.

      Regards Tim

    • Anonymous
      November 6, 2010 at 8:28 am

      Micahsmom: Imuran is an immune system suppressant. It is supposed to dampen the effect of the immune system, so that it no longer attacks the nervous system. My doctor has treated other CIDP patients with it, with good results. Problems are that it takes a long time to “kick in,” and has significant side effects. But if it works for me, I think it will be worth it.

    • Anonymous
      November 10, 2010 at 2:35 pm

      henstock

      thanks…i’ll mention it to my dr. he doesn’t like to try something if i am progressing with the current regime.

    • Anonymous
      November 10, 2010 at 4:18 pm

      [QUOTE=micahsmom]henstock

      thanks…i’ll mention it to my dr. he doesn’t like to try something if i am progressing with the current regime.[/QUOTE]

      Azothiprine is the generic of Imuran. That makes perfect sense that if you are progressing with whatever your current tx is not to make changes.

      I ended up very ill from Imuran within 5 days. A very low WBC count, an ear infection, a UTI, and a respiratory infection. It should not be treated lightly. People that have side effects usually get hit hard by them.

    • Anonymous
      November 11, 2010 at 1:07 am

      I had trouble with shortness of breath for several years before any other symptoms of cidp. I went to specialist- nothing was found. Chalked it up to allergies causing it. The eventually dx with panic attacks. After dx with cidp I was given IvIg infusions and I develoled three blood clolts in my left leg which altimately caused multiple blood clots in both lungs. Now when I get SOB I blame it on the blood clots. Donna

    • Anonymous
      November 16, 2010 at 1:27 pm

      The year before i was diagnosed with CIDP was the year that i quit smoking, and it was weird because i have never been shorter of breath than that year….although it was probably from the smoking

    • Anonymous
      November 16, 2010 at 1:27 pm

      The year before i was diagnosed with CIDP was the year that i quit smoking, and it was weird because i have never been shorter of breath than that year….although it was probably from the smoking

    • Anonymous
      May 16, 2011 at 5:24 pm

      Well, after many months, I (sort of) have an answer.

      After many visits to my family doctor and various specialists, my doctor finally ordered a high-contrast CT scan of my chest last October. It found “multiple bilateral pulmonary emboli.” That is, multiple blood clots in both lungs. I was rushed to the emergency room, put on powerful anti-clotting medicine (Lovenox), and kept in bed for three days. When I was allowed to get up, the shortness of breath was significantly better, but not gone. However, a repeat CT scan showed that the clots were completely gone. As a precaution, I was kept on Coumadin (so-called blood thinner) for six months.

      My pulmonologist suggested that I was deconditioned, since there were no more clots to cause the problems, and recommended that I try to be more active, and become better conditioned. I tried to do that, but between the weakness from CIDP and shortness of breath, it was pretty hard to be active. And the breathing problems just did not get any better.

      I went back to my pulmonologist, and he ordered some additional breathing tests. These showed that my smallest air passages were constricted. He called this a form of asthma, and recommended an Albuterol inhaler. It works very well: two puffs, and within minutes my breathing is much improved. So, I think his diagnosis of restricted air passages is correct.

      Now, here’s the kicker: I was wondering what would have caused the asthma, which I have never had previously (I am 63). He had noticed on my chart that I was taking Imuran, and asked what that was for. When I told him it was for CIDP, he immediately responded by saying that autoimmune diseases are also known to cause asthma, by causing inflammation of the airways.

      He went on to say that autoimmune can also cause blood clots. Since he now knows that I have CIDP, he wants me to stay on Coumadin until my neurologist is confident that my immune system is under control, because he is afraid that I will develop more blood clots. Of course, the time to get my immune system under control might be forever…

      So, in summary, I am hearing that my immune system also caused problems with shortness of breath by causing blood clots to form in my lungs, and by triggering asthma.

      Has anyone else had any experiences like this?

    • Anonymous
      May 17, 2011 at 10:53 pm

      I have shortness of breath also. I, too, was diagnosed with panic attacks. I believe my SOB is due to the CIDP- damage to particular nerves causing it. I do not have any type of infection. I am not retaining any fluid. My heart checks out fine.

    • Anonymous
      November 7, 2011 at 4:06 am

      [QUOTE=Sally]Jim,
      Your oxygen sats can read 100% even if your hemeglobin (Hgb) is low. (I’m a repiratory therapist.) That’s just telling you that the Hbg in your blood is fully saturated, but if you don’t have enough Hgb, sufficient oxygen can’t be delivered to your tissues. Your body responds by trying to get more oxygen, so you feel short of breath.
      When I was getting IVIG 4 consecutive days a month, I had some trouble with low Hbg, but it would build back up before my next round of treatments. When I started getting it 2x/week, it became a real problem.
      I don’t know if that’s what’s causing your shortness of breath, but it might be worth considering. :)[/QUOTE]
      Sally, I don’t know if this message from a newbie will get to anyone, but your answer about low hemoglobin and the saturations showing 100% even on a deathly low hemoglobin, is spot on. I’ve have four units of Packed Red Blood Cells recently for hgb of 6.0 (anyone want to go to the top of Pike’s Peak from sea level?).

      All my doctors missed it. No one ordered it. Being a doctor (not practicing) I tricked an RN into testing for hemoglobin and the lab was schrieking on the phone to all my docs. “Get her in the ER”.

      It is the simplest, cheapest,most essential test if your sat monitors are going to mean anything. You can’t rule out a damn thing in respiratory illnesses unless you know the henoglobin.
      Now, the Blood Utilitzation Committees are making it hard for doctors to get their CIDP patients transfused and mine won’t fight anymore so I have to get iron infusions and hope the hemoglobin increases that way. I can’t seem to absorb it in my GI system. (a family auto-immune problem)

      I’ve had two episodes of anaphylaxis with iron infusions this year, so you’d think they might decide on more blood transfusions. Instead, I was told to just “live within what a hemoglobin on 7 can do for me”. (Like “How long can you hold your breath?”)

      A full unit transfusion will only raise you about 1 point of hemoglobin. Doctors who transfuse us aren’t the gutsy kind in the ER and OR who tell the Blood Utilization Committee to go jump. Their patients get blood. Their families get blood. The Chief of Staff’s wife gets blood routinely.

      I have the congestive heart failure you mention (a function of low hemoglobin and not my heart which is actually very strong), when my hgb is low and it all goes away when my hgb goes over 10-11.

      The arrythmias drive me crazy from it. The cardiologist is mad at the hematologist who is mad at the neurologist but no one wants to be the one to set up the blood transfusion. Really Sally, It is the Perfect Answer, A++

    • Anonymous
      November 12, 2011 at 10:39 am

      I have shortness of breath also. It has always been an sign of anxiety for me all my life but has accelerated since CIDP – any wonder??? Anyway about 3 wks ago I was just going crazy with the breathing aspect (trying to take a deep breath without success over and over) and went to my PCP. We decided to try the Xanax route first. I am on .25mg/twice a day. It’s okay, helping a bit, and I hope this will be enough. I don’t want to get hooked. I think the fact that I am going to Chicago to see about a Stem Cell Transplant in a few weeks has me extra anxious. Well, that’s my story and I’m sticking to it! Glad you may have found your answer. This CIDP just seems to keep on giving and giving…just not in a good way!
      Wendy:)