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Symptom of BCG’s?
Hey gang!
Got a question.
Is delayed joint pain a symptom of BCG treatment?
I have quite suddenly come down with severe joint pain in my left hip, right shoulder and right hand. It is so severe that I had to stay home a day from work last week as I could not even walk to the bathroom while I was at work.
I’ve never had joint pain like this before, and now I am reading that BCG’s can cause joint pain.
I’m about 3 weeks out from the last BCG and this began on Halloween night, exactly two weeks from the day of last BCG. Has anyone ever experienced this symptom on delay like this, or, is this just something else that I need to add to my list of worries? :-/
Thanks, Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 200697 Replies-
I was beginning to think I was the crazy one, but a friend who went through the same confirmed she had this problem too. In my first maintenance round of bcg my teeth, upper and lower, on the right side of my face began to ache. Severely! Didn’t have this issue with the 6 week induction bcg, but this time it came on with a vengeance! Anyone else having this issue please let me know. The drs always look to typical side effects, of which this isn’t one, but I’ve seen it from patients in forums.
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Cheri,
I am sorry that you have had problems with BCG’s also, however, I must say that it is comforting to know that it isnt’ just me that this is happening to. Sometimes I feel that way.
It has been one month since my last round of 3 BCG’s and the funky fungal thing has returned under my breast and is really uncomfortable. The inflammation in my body was a 38 sed rate on yesterday when I went to the doctor where under 30 is normal. (So inflammation is elevated.)
Maybe Wendy is right, and females are more prone to the exagerrated side effects.
Thanks for posting. I do hope you will keep in touch.
Your BC bud,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
After the last treatment in my first set of BCG treatments I came down with flu-like symptoms and the same thing happened after my second set of treatments 3 years later after 2 small tumors returned.
Also, right after my first set of treatments I developed tendonitis of the wrist and trigger finger, which is tendonitis of the finger joint. I never had anything like that before and at first I couldn’t point to any other reason for it other than the BCG treatments. It got progressively worse and finally I needed two steroid shots in each area to make it subside. It’s totally gone now and I’m back to normal.
However my doctor gave me Cipro after surgery before I started each BCG treatment and I read up on it and apparently that can cause tendonitis.
After this second round of BCG treatments I developed eczema on my hands and elbows. I never had any dermatitis before either and it’s been over 10 months now and I’m still trying to rid myself of it. Doctors prescribed a very strong steroid ointment which I applied on and off for six months, but then I started to taste the stuff and then developed a horribly bad taste in my mouth, then I started to smell it also. At first I had no idea where it came from. One by one I totally detoxed myself and stopped an very low dose antibiotic I was taking for periodontis, vitamins, ointments, bleaching my hair, nailpolish, lotions, makeup, red wine– all sorts of things. Finally, after discontinuing the ointment for over 5 days my taste more or less came back. It’s been a few months now and it’s basically back to normal, but I don’t think it will ever be totally the way it was before all of this started because I sometimes still experience smelling a very slight but unusual smell and there are other days when my taste is just not up to par.
I asked the doctor if the BCG acted as an agent for absorption of the steroid ointment? My GP thinks so and says maybe the antibiotic or even the red wine could have enhanced absorption too.
All I can say is that when I first started each BCG treatment I’d get a slight metalic taste in my mouth, though it would disappear by the next treatment.
It’s been a while since you first posted about your BCG problems, I hope they have disappeared by now.
Anyway, this has been my experience with BCG.
Oh,
for the record…I did not become addicted to the highly-addictive pain meds prescribed by the dentist. In fact, I have most of the bottle left. It didn’t seem to help the pain very much.
Ro
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
Well, the horrible pain in my face disappeared about 3 days ago. Thank goodness :) I’m pretty sure that this facial pain was a by- product of the inflammation triggered by BCG’s.
So, if your body is prone to inflammation, like mine, do not have dental work in the same week that you have a BCG treatment.
I’m very sore and tired, but happily, the horrible pain in my face is gone.
The Urology Clinic was remiss in not scheduling my 6 week scope, so I made the call and am on the books for July 11th.
Bet regards to all,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
Wendy,
It is always nice to get sympathy from you. Thanks.
I really don’t think that others should be frightened of having the same extreme type of symptoms as me. I inherited psoriasis from my father, and that would make me a candidate for psoriatic arthritis. The BCG’s were just a catalyst for something already lying dormant inside of me.
This episode of inflammation is not near so bad as the extremely painful episode last November after those last 3 full treatments. I’m very glad that the doctor agreed with Dr. Lamm about reduced dosage.for this round.
I can live with this for awhile, and, I believe that the inflammation will recede over time with a blood level of Celebrex.
Thanks for all that you do here.
Your friend,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
Hi Ro,
It has indeed been an ordeal for you. BCG hits some people hard (esp. women, in my opinion), but not always. Many folks seem to breeze through the courses with side effects well within the normal range-usually cystitis, and that’s about it. You are what could be referred to as a ‘worst case scenario’. No wait, I take that back…. BCG can actually cause fatalities if there is any threat of it entering the bloodstream, if anti-TB drugs don’t work in time. But this is very rare, something like less than 1%.
Your experience, on the other hand, is probably more common than we might want to think. There is a lack of studies looking expressly how women react to this treatment, not unusual when you consider men outnumber the women 3 to 1…it’s probably hard to get a study or trial together. We should start asking about this!
I hope you feel better with each passing day. Stay well,
Wendy
I think I would like to make a general statement here about symptoms of BCG’s based on my own experience with a multitude of symptoms. Ya’ll can quote me on this and I’ll stand by it…
BCG’s ARE A WHOLE BODY EXPERIENCEI’ve always had a book in my home called, “Listen to Your Body”
In my case, I heard my body screaming at me, which in my interpretation, is okay. After all, inflammation is assumed to be the whole point of how the BCG treatments work. If that is true, then my misery is worth something. :o
The symptoms are getting a little better with time away from BCG and with Celebrex. The pain in my teeth and face is getting better, but my body still hurts with movement. Sometimes, my Mother hears me groaning from my bed. I am having tremedous night sweats too and most evenings after supper, I fall into my chair to a deep sleep and then wake up just to go to bed.
Celebrex, I must say, has been a blessing and is tremendous help. However, it is very expensive.
Thanks my friends,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
Dear Post,
It’s very hard to pin the cause of these things down. Listen to your body and stay aware. Report every thing to your doctor.
I’m guessing, based on my own symptoms, that if your symptoms are BCG related, then they will not be permanent. For myself, the inflammation seems to need treatment. And believe me it helps!!
Take care and be sure to pay attention to your body and your symptoms.
Your friend,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
I just had my 4th treatment and have noticed some sharp pains in my fingers (3 of them)
that I hadn’t ever had before. Recalling treatment number 2, I had a similar pain in my left index finger.
It felt like a sprained tendon and lasted a week or so. Last nights pain lasted a few moments and reoccured
intermittantly over a 2 hour period and then was gone. Today they feel fine:-)>
I play several stringed instruments so my fingers are fairly flexable. I hope this joint pain was just a passing side effect.Rosemary….did the doctor tell you to take the Celebrex? One of the side effects of that particular drug is a rash… also swelling. Make sure you take it with food…it can be pretty rough on the stomach. How many are you taking a day? Is the doctor helping you at all?
You obviously have horrific inflammation and i worry about the face/jaw pain. I think you should also see your internist and get a complete check-up including EKG. I’m worried about you. Pat
It’s been 2 1/2 weeks since final BCG, and I am feeling increased inflammation in my body. My toe is large and swollen and my thumb….well, it hurts…
The rash has reappeared under my breast, and I’m burning around my urethra and vaginal area. I put some yeast salve on the area tonight and we’ll see how it goes.
My teeth are causing a lot of pain in my face and head, but the pain recedes when I take Celbrex. (An anti-inflammatory medication.)
I’m really not complaining. But, I do want to make a record, because I tend to forget the sequence of events, and because I hope that this record might someday blaze the BCG trail for someone else who may exhibit similar symptoms in their body.
I do know now, that these symptoms SHOULD get better. But, since, I have a couple of new symptoms this time, there may be more to this story.
Good night guys,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
Okay guys, I don’t want to beat a horse to death, but, I would like to just make a record here, in case someone else has to go through this, then I’m hoping that my record will help.
I had to get up in the dead of night last night to take pain meds for the terrible pain in my teeth and face. This morning, on my way to work, the pain was edging up and I was worrying that I might have to make an appointment with the dentist to extract the tooth, get a root canal or at least beg for some antibiotics.
This is so unusual for me, and my supposition is so strong that this aggravation is BCG related, that I made a last ditch try, thinking that my body is full of inflammation, I took a Celebrex. I took the Celebrex at 8:00 this morning and it is now 1:45, and I’ve needed to take nothing further than that little pill. The pain is completely subsided.
I’m taking a wild guess that the inflammation in my body that has been a result of BCG treatments is causing this terrible face pain after my dental work. At the very least, I believe that it is aggravating it out of all proportion.
I am so glad that the pain has subsided. What an awful pain it is.
Your friend,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
Hey Yo,
As always it’s good to hear from you. I’m glad your husband is getting a break and wish him the best at his poke and peek in June. My doc said he wants to take a peek again in 6 weeks, so, if all is well, then I suppose I’m back on the every 6 months schedule.
Most interestingly, my arthritis has not worsened with these last treatments, but, I am still having trouble with my teeth. The dentist prescribed a strange mouth rinse with Benadryl (?) and Nystatin and Hydrocort. He agreed that the BCG treatments might have aggravated the situation. The mouthrinse helps, but, I still have to take Aleve or Tylenol. The doc gave me Oxycoton :-X which I was scared to take, but finally did, and 10 minutes later, was surprised to see a news report on every major TV network about how addictive Oxycoton is…. :o
Anyway, the pain drove me to try it again today, but honestly, the Tylenol seems to work better. I’m hoping that you are right and that these miserable side effects will fade away in a couple of weeks time. Painful teeth being one of them……
Give your hubby my best.
Thanks for your post,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
Hi Rosemary,
I hope you are feeling lots better today but I know from my husband’s treatments that it’s about 2 weeks or so before you really start feeling a lot better. I think you and he were pretty much on the same schedule but I believe he’s had 3 more treatments than you. I think he felt as crummy as you also, meaning lots of bleeding, frequent urination, bladder irritation and body aches. He’s getting back to normal now with the last treatment on 4/27. So, this is it for you? His next scope is in June and BCG won’t start again until October. Best of luck to you and everyone on this board going through this.
Happy Mother’s Day!
Yosemite
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