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I have been taking Rituxin infusions every 4 months for the past 2 years. My white count has steadily dropped, now showing low on blood work. Concerned about risk of infection. Has anyone else experienced this? I’ve had one completely negative ANCA. The last time the PR3 was slightly elevated.
Hi jackiekc, I have not been on the forum in awhile, but I saw your post and I have the same issue. Of course, its the same but different! LOL.....I have limited Wegeners, diagnosed in 1990. I have never "technically" gone into complete remission. I have to stay on 5-10mg of prednisone all the time or I will flare. Doctors call me a "simmerer". That said, I have had Rituxan in the past, not on a regular basis like some doctors will do, but I will have an infusion, and then see what my labs show. I seem to always have enough inflammation in my labwork, that the doctor is not quite sure what to do. Although it did seem to work for me except I still had to take low dose prednisone. In the last 3 years, my Rheumy has hesitated to give me Rituxan because of my white cell count, it takes so long for me to recover...it makes him nervous because my lungs and sinuses can get infections, and have in the past. Right now, I have been taking a very low dose of oral methotrexate...and I believe I am having a small case of shingles. This tells me that my immune system is down. But I will be seeing my Rheumy Tues, May 22. I'm sure he will do labs, and I will let you know what I find out. Take care Warrior!!
My Lymphosites (which are part of white blood count) become low during the periods when rtx is in full influence. I get rtx every 6 months, 2000mg, since 2013.
As far as I understand if you want to know if your body can fight infections, you need to check your Igg.
Btw, Lilly, "limited wg" is a wrong concept used by some docs. They use it to mean that there is no kidneys involvement. But no wg is ever "limited" and it might be life risking even when the kidneys are not involved. It must be treated seriously. The first rheumatologist I saw when my wg started, called it "limited" and said that there is no need to treat it more then just pred. As we all know, He was very WRONG.
Thank you Alysia, I always feel like its wrong to say "Limited Wegeners", because my kidneys ARE affected, just not as much as my face, ears, throat and lungs. Usually, having red blood cells in my urine, OR having a UTI is a sign that I am going into a flare. I'm not sure if that's what you mean, but I do know that my kidneys are part of my wegeners. I just looked back at my lab results from my last few visits with my Rheumy. The last Igg I had was 11-19-17, it was 570.0mg/dl The one before was 6-16-17 It was 400. mg/dl I believe my Reumy uses the C-reactive Protein on 4-23-18 it was 0.92mg/dl 2-23-18 it was 1.2 mg/dl ----- I go back to see him Tues the 22nd, but I just found out that I am having an outbreak of shingles!! A small case on my right arm. Now I am on medication for that. I have had a couple other small cases of shingles in the past 2 years, and wondered why they were not large and involved, like I think shingles is. Like my Daddy had it, and I have never seen him show pain!! It was horrible! And my brother in law had it too, my sister said he actually cried! But I'm having these small little cases. Then I looked up and found some information that scared me.....It is CYTOMEGALOVIRUS - a kind of herpesvirus that usually produces very mild symptoms in an infected person but may cause severe neurological damage in people with weakened immune systems and in the newborn. (((YIKES!!!))) I am trying to be strong, but my lungs are horrible even on the methotrexate. The days before the shingles showed up on my arm, I was like a Zombie, tired, achey all over and sleeping very hard, and just doing my best to do the important things in my life and home, and I just had to push myself to do that. Shingles is unbelieveable!! Even a mild case. Goodness, what else can happen?? I'm just praying that my lungs are not infected. They sure sound like they are.....Blessings sweet friend, Thank you for your prayers, and caring about me. I will let you know how my Dr apt goes. I will ask him to run an Igg test. Love you
Oh no Lilly, I am so sorry about those shingles... it's been few days since you wrote that post (sorry for not writing back earlier), do you have any news ? How are you feeling so far ? Will you please update us ?Quote:
Originally Posted by Lilly
Hi, finally back. I went to Rheumy Tues, 22nd. He is a good doctor, but he likes to "think" about things and not make hasty decisions. The shingles thing kinda messed up his thinking. He called in Valtrex and I have been on it for a week. He is now considering having me take the shingles vaccine. I am hesitant, but shingles is hard on your body, even a small outbreak. My Doctor has been so focused on keeping my inflammation down with low dose methotrexate, (instead of Rituxan treatments which cause my white cell count to take so long to recover) while trying to keep my white cell count normal, and in the middle of that treatment I get shingles. I think I am driving him batty!!!! He is keeping me on the methotrexate for 2 more months (until my next appt) and he did draw blood but no urine. I still have not received lab results, which is strange because I usually get them in 1-2 days. I have been flat out exhausted and have slept all day Wednesday and Thursday! My parents have run a couple of errands, picked up my meds from pharmacy, etc. so I don't have to drive. I have so much mucus in my ears and sinuses, that its painful, and you know about the hearing issues. My Mother went to our family Eye Doctor last week and told him what was going on with my ears, and my EENT was not even considering any type of help for me, such as the BAHA. He never even mentioned it. And practically scoffed at the word "choclear" when I asked him about it. So our Eye Doctor gave my Mom a name of another EENT that may be able to help me, and be more open minded. I am also going to do a little research on places close to me, such as University of Alabama at Birmingham (UAB) I went to UAB for 11 years when I lived in middle Alabama, and they are a research hospital as well as having many Specialists and are always trying new ways and treatments. I was part of one such study when I went there. Anyway, I will be in touch. We are having some bad weather here, and my power is going on and off.....Blessings and Love Lisa :-)
Most big Universities have a medical school and often the staff in those facilities are most likely to keep up with current research and treatment techniques. So they are usually a good resource for unusual problems.
Hey Lilly,
Just thought I should pass this along. My Rheumatologist told me in no uncertain terms-NO LIVE VACCINE. The shingles vaccine is a live one. Also the shingles vaccine that was on the market has been taken off. I don’t know the reason. One more thing, many antibiotics kill any live vaccine you may have had. Ask your pharmacist about this. When I took Keyflex for sinus infection (generic forms too) the label and accompanying information say it wipes out any live vaccine you may have had. I do understand shingles is profoundly painful, but with the other things you have going on I would proceed with caution. Masha
Lilly, did a little follow up. There is a class action lawsuit against Zostavax (sp.). The new shingles vaccine is Shindrix, it is a two part one. For more information go to cdc.org. Again I caution all live vaccines with what you have going on.
Thanks for your reply! I hope you are doing better. My Dad has the Shingles right now and having a horrible time.
The shingrix vaccine is a dead virus vaccine. Both my PCP and Dr Villa Forte recommended I get it. After the first dose, I had a sore shoulder at the injection site (as with a tetanus shot) for about two days. I had the second dose two months later. After this dose, I had flu-like symptoms (body aches and low grade fever) the day after the injection. I also had a sore shoulder for five days. I was back to normal five days after shot #2.
Pete, This is great information. I have an appointment with one of my doctors this week and will discuss it. I have no doubt he will encourage me to get it. Since I was told to stay away from live vaccines like Zostavax, I just assumed the new shingles vaccine was also live. Just goes to show you my old college law professor was right. “When you ASSUME, you make an ASS out of U and ME!”
Masha
Gosh I think there is a lot of misunderstanding and some disagreement about this. Possibly it depends on timing and what other medications are being taken. I was told to get all the vaccines (shingles, flu, pneumovax, etc.) early on after my diagnosis. I think the idea was to get those things out of the way before potential treatment with a biologic agent. I certainly agree with Masha... proceed with caution after consultation with docs who know what they are talking about.
I've said before and still think that the terms "limited" and the alternative "non-severe" are misleading, because every case is different, and just because you don't have kidney or lung involvement does not mean you cannot become very ill. However, I think if you have kidney involvement, you fall out of the "limited" category under the current definition.
There is a new shingles vaccine, called Shingrex, that is stronger and has a two stage administration; it is supposed to be more effective than the other one.
I saw a new, young rheumatologist up here recently, who ordered every lab test known to man, as far as I can tell. I've never had so much blood drawn at once before! My pcp was concerned because of some elevated labs months ago, but I'm told I'm in a pretty solid drug free remission and need no maintenance meds for now. Still struggling with nasal/sinus symptoms and very annoying hearing loss and tinnitus, but all of that is caused by damage from my acute phase of illness several years ago. I just had a sinus CT that shows vast improvement over a study from a couple years ago.
I definitely feel your pain regarding fluid in the ears, hearing loss and eustachian tube dysfunction. It can vary so much from day to day and really mess with your ability to navigate the world!
Out of everything I went through at diagnosis, DVT, on the vent twice, IVC filter, nerve damage to my foot, hospitalized for 31 days and having to relearn how to walk...interestingly enough, Tinnitus is my most bothersome issue at this point. Hearing aids ordered yesterday. Hoping they help!
Completely agree. I would even venture to say that if Wegs is allowed to run its course, without treatment it will get to the lungs and kidneys and destroy them.Quote:
Originally Posted by Alaskatom
I've read that even without renal involvement, the mortality rate for untreated disease is 40% or more, and of course much higher with vital organ involvement. At least these days there is some understanding of the illness and some effective treatments, assuming one is diagnosed before too much damage is done.
Boy, do I agree with all of the above. I have heard that it is no longer limited when it hits your trachea. My question is, however, how can it be limited if it hits your eyes, ears, brain? Yes, Alasktom, you are so right, it can never go untreated. I have paid close attention to Pete’s information. Even though he is feeling well, he and his doctors stay on top of it. When I was first diagnosed I asked my Rheumatologist how long I would have this disease and need treatment. He gingerly told me for the rest of my life, but quickly added that as I improve treatment would change. My doctors talk in the direction of improving because I am such a Nervous Nelly, but they have also made me aware things can slide downwards. After reading some of these posts where patients are begging for tests and treatment, I thank my lucky stars that is not my story. So many tests, blood work, biopsies I get worn out. I can feel an improvement after my second course of Rituxan. The next series will be five months from the last, instead of six. I ask the RN’s at infusion what the letters on my blood work mean, then I do my homework via google before meeting with my doctor, so that I have a better grasp of the questions I want answered. I have learned there is a fine line to walk, living a normal life and not becoming paranoid. My biggest challenge has been learning to say no, and not exhausting myself as I did before Wegeners. I think about all of you and your stories and pray for you.
Masha