View Full Version : Flare up??

08-29-2009, 07:31 PM
Just posting for some advice, to see if my symptoms ring any bells with anyone???

I gave birth 5 weeks ago, and typically, I tend to flare up post pregnancy. Once with Tracheal Stenosis, the second with severe Optic Neuritis, and then there's this time!

I know that a few weeks ago my ESR and CRP were up (i just had some aching joints), but no other symptoms. Now, I am vomiting, my hands and face are swollen, loss of appetite, weakness (probably due to dehydration??), protein in my urine (I had some sticks left over from my midwife when she monitered my protein levels during pregnancy). Also, the palm of my hands are really itchy/scratchy i can't describe it.

Does this sound like anything WG related?

Sorry for the vague symptoms. My husband has gone out for the day to play golf, and has left me with with the children under 5!! I'm not happy, i'd be at the hospital having my bloods done if I could. :(

08-29-2009, 10:01 PM
You need to get this checked out quickly. Like today!
These are the sort of symptoms I was having when I went into renal failure and should you be that unlucky, the quicker you act the better.

Sorry to sound alarmist, perhaps it will turn out to be something simple, I hope it does.

08-29-2009, 10:15 PM
thanks for the reply. i will do asap, i've got a rash now too :eek:

can kidney disease come on quickly with WG?

08-29-2009, 10:16 PM
Jack did your hands and fingers get swollen? I can't get my wedding ring off - this has literally come on in the past 3 days. thanks for any info x

08-29-2009, 11:35 PM
Those are classic kidney problem symptoms and with Wegs the risk is kidney failure. Especially after a pregnancy, where the kidneys are even more stressed.


If I could leap through this monitor I would right now. Even if you have to take the kids, they can care for them in the ER.

08-29-2009, 11:36 PM
And by the way, congratulations on the birth of your baby!

08-29-2009, 11:39 PM
I have everything crossed for you Gwenllian that you're gonna be ok.

It is not good news to hear that giving birth can cause a flare up so bad - this will now also be a factor in my decision whether to have a child or not.

08-29-2009, 11:45 PM
I didn't know if you knew that, Luce. Pregnancy is very stressful on the body. Flares during or soon after pregnancy are not uncommon. I don't say this to scare you, just to inform you. Your docs really should have explained that risk. This is why I encourage you to try for a baby only if you're really excited about doing it now. That way, the mental stress is not a big factor as well.

08-30-2009, 01:40 AM
Thanks Sangye - I knew that obviously pregnancy was a big stress on the body and that I could probably expect a flare of some kind.

What I didn't expect was the unfortunate and very serious effects that
Gwenllian has experienced - tracheal stenosis particularly scares me.

And no, my docs did not mention that pregnancy could set me way way back in my progress of recovering from WG.

I completely agree about not going through with this if I'm not 100% happy and excited to be talking about children right now - it's no good thinking I'm sure to come around to the idea because I might not, ever...

08-30-2009, 05:23 AM
I went to the out of hours GP tonight, and she was awful! She just sent me home, as though i was worrying about nothing.
She looked at my swollen and inflammed hands, and told me to go back to my own doctor on tuesday and that i could wsell have poor kidney function. great!! nothing to worry about there then!:rolleyes:
I felt like crying. :(
the pain in my trachea is intense too. i feel so ill, sorry for the moan i just feel really isolated and sad that the doctor was so useless. she must have spent about 3 mins with me, and didnt even know what wg was.

i have no regrets having my 3 children. the pregnancies werent easy, but it was worth it xx

08-30-2009, 05:27 AM
Gwenllian, please see someone else straight away - I don't think this can wait until Tuesday! Another classic case of a doctor with no Wegs knowledge.

I'm sure I wouldn't regret my decision either, it's hard when I being forced to make it 5 years before I thought I would need to.

08-30-2009, 05:38 AM
Gwenllian, I'm so sorry you got such an idiot for a doctor. She didn't even do basic blood work or a urinalysis?? :mad:

I hate to say it, but you need to get to a proper hospital and get checked out. I know you must be completely exhausted. Please just muster up any shred of energy and go. You would do that for your children, right? Do it for their mother! In case you get an ER doc who also doesn't have any sense, then demand basic tests (urinalysis, CBC, Blood chemistry, Sed Rate, CRP). There are times you can let things slide a few days and times you cannot.

08-30-2009, 05:52 AM

Your experience pisses me off so bad....!

That doctor WAS an idiot! I hope you read this after you followed the advice of Luce and Sangye because a pregnant woman going into renal collapse because a doctor can't see the issues staring her in the face is just too much to tolerate!

And, yes! Demand the blood work and the urine analysis. You have a human right to proper health care! :mad::mad::mad::mad: plus one.

(Also, get your husband to read this forum so he understands how serious your medical issues are at this point.)

Cindy M
09-02-2009, 05:02 PM
Gwenllian, I cannot tell you how mad I am right now for what you are going through. It is so scary that they cannot see the fear and pain that you are in. Telling you to wait to see your family doctor??? Maybe the doctor should have spent a little time doing research to see what they are dealing with and not just brush it off. I hope you get the proper care ASAP.

09-03-2009, 01:30 PM
I hope you have gone to a different doctor by now, or to the hospital. You need to keep your health to care for your children. Sometime you have to just insist. I didn't, but my daughter did to my endless gratitude. I hope for all the best for you. I have also learned it is inportant to be assertive when you need to be. Maybe with your husband too when you need help. Germaine

09-03-2009, 02:32 PM
Gwenllian, I hope by now you have seen your doc and are on the way to recovery. I'm not surprised by the total lack of knowledge, however I am absolutely horrified by the lack of decency and common sense when told you have Weg's. When you are feeling up to it I would write a strong letter about what happened to you. It is inexcusable and both the doc and the medical board of your state should know about it, not as a rant but a learning tool to help prevent future mistakes.

09-03-2009, 02:33 PM
Also, on a happy note my best wishes to you and your family.

09-05-2009, 02:51 AM
Thanks for all your lovely replies.

After seeing that awful GP, I took myself to the ER. Luckily for me that I did, as I was indeed having a flare up. It was complicated though, after some tests, it was found that there was some extra 'growth' detected (probably granuloma) where my tracheal stenosis is, which has started to extend into my esophagus making swollowing and eating very very painful. I was also having flu like symptoms, swollen joints, etc, and feeling pretty low by that point. Luckily, my rheumatology consultant found me and has sorted me out, and let me home over the weekend, only to go back in on Monday to start Ritixumab treatment again which should hopefully get me back on track again.

Thank you so much for all your replies and support, it really brings things back home to me and I don't know what i'd do without the support of this forum. xx

Cindy M
09-05-2009, 03:05 AM
I am so glad that everything is working out for you. I wish you and your family the best and hope you are on the road to recovery. Just remember, and I know it is hard with a family especially with such young children, but you MUST be selfish and think of yourself first. Take the time you need to rest and get better. You need to be proactive with your health which I learned the hard way.

09-05-2009, 03:05 AM
SO glad to hear from you! I was worried.... My doc is trying to get me on ritux, too, as the ctx isn't cutting it. I'll have to pick your brains about ritux, since I don't know much about the schedule, side effects, etc...

Cindy M
09-05-2009, 03:18 AM
Hi Sangye, I started taking ritux in August, my first IV dose was August 6 and the 2nd was on August 20th. I had a mild reaction while getting the IV, my throat became sore and itchy. They stopped the IV and gave me benedril and then everything was fine. I was there for about 8 hours the first time and about 6 hours the second. For a few days after the IV treatment had headaches and felt almost flu like, but then everything was fine. It does take anywhere from 3 months up to 18 months for the drug to fully work.

09-05-2009, 07:42 AM
Did they keep you on another immunosuppresant while it got up to speed? I haven't talked to my doc about all this yet--just doing my own data collection.

09-05-2009, 08:15 AM
So glad to hear from you Gwenllian - I was also worried.

I'd be interested to hear a little about Rituximab too as it has been mentioned as a way to help me conceive.

If you don't mind me asking, did you fall pregnant with all your children while on Rituximab? I only ask because I can't find a consensus opinion on whether CellCept is a safe drug during preganancy - both azathioprine and cyclophosphamide explicity advise against it.

09-10-2009, 10:35 AM
Gwenllian, so glad you are sorted out and all is getting better.

09-10-2009, 02:30 PM
I'd be interested to hear a little about Rituximab too as it has been mentioned as a way to help me conceive.

Luce, May this be your answer! Bunnies are sweet, but babies are better.:)

09-11-2009, 05:41 AM
But baby bunnies are furrier!

09-11-2009, 06:03 AM

Bob and Amber sharing supper.

09-11-2009, 06:55 AM
SO cute! :):):)

I take it Amber is all better now? (She was the sick one, I think)

09-11-2009, 07:04 AM
Yes, fully recovered now thanks. :)

She is the one on the left.

09-11-2009, 12:54 PM
Beautiful, Jack! I had three rabbits as a kid, but seeing this photo makes me wonder if they could work as a pet for me now. I'd have toi have an indoor one like Luce. They can be characters, though, very entertaining. :)

09-11-2009, 04:29 PM
They're sooo cute!! I have a border collie, he's like an old man in the house. :)

I've not heard of Ritixumab helping conceive, but I found that having Ritix prior to conceiving, meant that I had a much smoother pregnancy when I did fall pregnant.

When I was having a 'rumbling flare' and pregnant (my first 2 pregnancies), I had awful problems with high blood pressure and pre eclampsia, which apparently, is quite common with Weggies.


09-11-2009, 05:35 PM
Hi Doug

Barley actually lives outdoors next to a hutch with two guinea pigs called Dexter and Dilbert. But they all come in to the flat when I get home from work for a bit of exercise and attention.

Not sure I would trust Barley indoors on her own - she loves to chew wires, carpet, wallpaper etc.

Our rat Pepper (Chilli died recently) is the only pet who lives indoors in a nice tall cage so she can get her exercise that way.

Perhaps I need a climbing wall in the flat so I can my daily exercise too?

09-11-2009, 07:37 PM
Rabbits love to eat electrical cables and have teeth like wire cutters!

09-12-2009, 05:30 AM

I'm pleased to see you've changed your signature to indicate you're the proud mother of three girls! Congratulations a bit late on the new baby! That's probably, at minimum, a six "happy face" moment, but you know how we are forced to show restraint in that matter. So ~ :):):):) +2

09-12-2009, 05:33 AM
Scratching posts for cats, incisor exercisers for rabbits....! I'm not sure I can imagine what a rabbit might like to chew on rather than everything else.

09-14-2009, 05:42 PM
Our pet hamster lived to a ripe old age of 5 1/2 years. She was practically hairless and we loved every bold patch. Her favourite trick was when she fell off a table to lie still with all ther paws up, the first time it evoked a huge panic as we all thought we killed her. She also liked to ride on shoulders or inside front shirt pockets. My husband had to put her to sleep after she was aflicted with paralysis. We still remember her frequently even after more than 14 years.