Hello - Another one from South Africa

Hi all, My name is Marius and I'm from a smallish city called Witbank in South Africa. My story started about 16 months ago when I started having all kind of muscle ache's and pains. At first I thought it was just lack of exercise as I just started to do vigorous gardening, but soon realized it must be something else as the pains were coming and going - unrelated to when I was gardening.

Went to the doc, and was given regular ant-informatory meds, but to no avail. Pains kept coming and going. Then about the same time I started having sinus issues which was strange to me as I never suffered from sinus issues really, that being strange as our town is known for the filthy air. I was confused as I thought I now am suffering from 2 different angles and at first told my doc. that we can leave the sinus issue for now and just concentrate on the muscle pains as these were having a more profound impact on my daily life then.

In any case, to make a long story short, after many visits and blood tests etc to the doc. I landed up at a Rheumatologist with a diagnoses of Rheumatoid Arthritis. Soon after that my sinuses were acting up so badly (heavy headaches and bloody discharge from nose) that I went to a ENT doc and he said right away that something's wrong up there as my sinuses looked like a "war-zone". He took biopsies and confirmed the diagnoses of WG.

That was the beginning of October 2013. I am now seeing this same ENT specialist, still the same Rheumatologist and an Internist Specialist. They say that other than my nose, no other organs seems to be affected currently and therefore did not give me the Cyclo- or Retoxi- (sorry, do not know the correct names) medication. I am currently on Methotrexate 25mg /week, Prednisone 30mg/day (tappered from 40mg a week ago) and Azapress 100mg/day. Also Folic acid, Vimovo and Calciferol.

I am currently feeling great except for my nose as I feel there is still something going on there but at least I am without any pain and can do most of my work without much difficulty. My eyes are still a bit light sensitive, but much better than before diagnoses. I am seeing the ENT doc again next week and hope he can do something for my nose.

Sorry for the long letter, but as I see in most cases the road to correct diagnoses can be long and troublesome. I am just glad that I am at this stage still doing fairly good and hope it does not go down from hereon.

Regards
Marius

Hello Marius,

Welcome to the forum. Hope you get some relief soon. You're actually on two immunosuppressants with methotrexate and azapress (aka immuran). Keep tracking your symptoms and talking with your docs. I hope that either your rheumy or ENT has good experience treating this disease. You may also want to check the Vasculitis Foundation's website for a list of experts your doc could consult with.

Feel free to ask questions, share experiences, or just vent your frustrations here. Somebody will reply to you with an appropriate response fairly quickly.

Good luck and better health.

Welcome Marius, and congrats on getting it under control right away. I have a similar case except my lungs went wonky for a while. I've never been on anything but pred and mtx for just over 2 years. The mtx has done its job well. Best to you, and ask any and all questions you may have as this progresses.

Hi Marius and welcome.

You symptoms sound very similar to mine, and many others of us on here.

I'm glad that your ENT was on the ball. Mine was also quick to pick it up - it just took me more than twelve months to find him.

Are you using any sinus rinses for your nose? These do help with the infections, the congestion and also the crusting.

Take care and I hope things settle down for you

Welcome, Marius, and I am glad that you are getting things under control with some basic meds and not having to use the big stuff like CTX or RTX at this point. I hope things continue to improve. Your story does sound familiar. I hope you will continue to log onto the forum and ask questions, share experiences, vent, and join in discussions. It is an indispensable daily resource and support system for many of us, as well as a place to make friends.

Hi Marius,
welcome to the forum :)
It seems that you have relatively good docs, who knew what to look for.
I wonder about taking both MTX and Imuran. anyone here knows about it ? is it possible ?

Welcome to the form. I, too, am glad you don't need the big guns (Cytoxan or Rituxan) and should be able to get things under control with MTX and prednisone. There is so much information on here and you can always ask questions and get a response and support. I hope things continue to improve for you.

Having an experienced doctor makes all the difference. Here is the list of doctors with experience treating WG that Pete mentioned: VF Medical Consultants

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Originally Posted by rebekah

Welcome to the form. I, too, am glad you don't need the big guns (Cytoxan or Rituxan) and should be able to get things under control with MTX and prednisone. There is so much information on here and you can always ask questions and get a response and support. I hope things continue to improve for you.

Having an experienced doctor makes all the difference. Here is the list of doctors with experience treating WG that Pete mentioned: VF Medical Consultants

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Thanks for posting that link, Rebekah, and here is another one that I found on the site, a list of New Specialists, who are considered to be "up and coming" vasculitis experts in various places in the US and around the world. New Specialists This page goes into a lot of detail about these docs and has statements from them which are interesting to read. These links can be hard to find on the VF site for people unfamiliar with it, and there is also a Find a Doctor button which might mislead people because it goes to the College of Rheumatology site and lists a few docs who may be good rheumies but not necessarily vasculitis specialists. At least that's what I found when searching for local docs. So it is nice to have the first two links saved somewhere for easy access.

Hi, I am new to this site, having trouble figuring out how to post! Help please!

sectech1, welcome to to forum. If you click on one of the topics such as "New Member Introductions" you should see a blue button on the left side of the page (under the yellow notes) that says "Post New Thread." If you click that you can create your post.

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Originally Posted by rebekah

sectech1, welcome to to forum. If you click on one of the topics such as "New Member Introductions" you should see a blue button on the left side of the page (under the yellow notes) that says "Post New Thread." If you click that you can create your post.

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Yes, and you generally need to go to Forum at top of this page, to find your list of topics to choose from. But since we are already on New Member Introductions in this thread, you can just click on that at the top of this page and it will take you there, where you will see the Post New Thread button that Rebekah mentioned.

Hi all

Thank you so much for welcoming me! It feels great to not be alone out there anymore. The doctors made such a fuss about the rearity of this disease that I was left feeling all alone and dreadful. This forum is absolutely great for gaining knowledge about WG and learning from people also suffering from it. Although a bit gross, I loved the thread about boogers! The same stuff comes out of my nose - and again it made me feel so much better that it's not just me.

I use a sinus rinse for my nose, but I think I was over doing it a bit as I now have an infection in my left ear. Luckily I'm seeing my ENT tomorrow, so hopefully he can do something about it. Although this ENT was great in making the right diagnoses right away, he admitted that he has no experience with this disease and referred me directly to an Internist. My problem is that between this Internist and the Rheumatologist, nobody seems to want to take charge and both wants to be seen more as in an advisory role. Perhaps this is why I am currently on both MTX and Imuran. I will definatly take this up with them.

Marius, you might contact the others from South Africa on the forum and see if they can recommend any doctors near you who would be willing to take you on as more than just advisors. And your docs themselves may be able to help there. Check the Weggie Map link at top of page to see where these members are.

I'm glad you liked the booger thread, although I did not go there myself. The fact that some enjoyed it should be encouraging to those who want to post their favorite booger pics.

Some of us do multiple sinus rinses at one time, because sometimes it's the only way to get the real monsters out. I don't know if it could cause an ear infection, unless there is something unsanitary about your procedure. Ear infections often happen with Wegs because the Eustachian tubes are often swollen shut so that they can't drain properly and fluid builds up in the middle ear which may harbor infections.
Also, Wegs can mimic infections. So I'm not sure which scenario would be most likely.

Hi Marius and welcome to the forum

I live in Johannesburg. I think because there is no vasculitis center here is SA (where we with WG could congregate and be treated and where the doctors would get experience with vasculitis ) you will never find a doctor here who has a lot of experience with WG. Having said that, it is a Rheumatologist who has the greatest knowledge of drugs used, their side effects and how to monitor your body's response to your treatment by ordering the relevant blood tests at frequent intevals. You will still need to consult with your ENT for specific treatment for your ENT symptoms but the Rheumatolologist should be your main doctor and he should take charge. He is trained to do that.

My rheumatologist has treated only a few WG patients in his career. Because I have lung and kidney involvement I also consult with a nephrologist and pulmonologist at least annually and more often should I have a problem. The Rheumatologist I see more often and he checks my kidney and liver functions, FBC and inflammation markers. He prescribes my drugs, adjust the dosage if required and will refer me to the relevant specialist should he be concerned.

I am surprised that your Rheumatologist does not want to take charge. Maybe you could consult with another. Probably Rheumatologist in the Jo'burg area will have come across more WG patients than the ones in your neck of the woods, Witbank being a small town. If you are prepared to travel I can give you a few names.

Rose

Thank you all for the usefull information sharing, and Rose for replying just over the hill from Johannesburg! Witbank is about 140Km from Johannesburg so to travel there is not that much of a problem. I think it is still very early days, so I will wait until my next visit at least before starting to look for a new Rheumatologist. Her practice is in Pretoria, so I travel in any case about 120Km to see her! Maybee we just did not understood each other 100% the first time - which is possible as I was still reeling from the news of this disease. If not, I will ask you Rose to share your doc's details.

I went to see my ENT today and are very pleased as he says my nose and sinuses are actually doing quite well and is looking much better than a month ago.:biggrin1:
A pity that he also said that because of the damage already caused my nose will probably never be as it was. But at least I am reacting well on the current meds -although being on 2 types of imuno suppressants which I still need to take up with the Physician. I dropped the prednisone from 30mg to 25mg as from today. Let's hope for the best.

I am seriously looking for a better medical aid scheme at the moment as this caught me by surprise -being quite healthy and all before this. With all the tests and stuff before diagnoses the medical aid got depleted and now that we actually knows what it is I have to pay for everything myself. I do not know how the medical insurance works in other countries, but it seems that here in South Africa WG is not recognised as a chronic disease, so you end up paying for almost everything yourself after the elementary benefits are depleted. I've heard that the serious meds are extremely expensive and feel that I should try to get the best medical cover now already - without breaking the budget of course.

Don't you guys sometimes feel -especially with the forum and all- that you are getting too much involved into this disease? What I mean is, don't you feel that you are consumed by it to such an extend that WG and all that can go wrong is always on your mind? Maybe I feel this way because I was diagnosed recently but it is as if I can not think about anything else anymore!

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Originally Posted by Marius

Don't you guys sometimes feel -especially with the forum and all- that you are getting too much involved into this disease? What I mean is, don't you feel that you are consumed by it to such an extend that WG and all that can go wrong is always on your mind? Maybe I feel this way because I was diagnosed recently but it is as if I can not think about anything else anymore!

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With this disease's vague and sometimes insidious symptoms, it's easy to be paranoid. However, that paranoia can be a lifesaver if you ask your doctor about odd symptoms instead of ascribing them to something else, such as aging or over-exertion.

Marius, I think you are right that the forum keeps me extra involved with this disease. I probably spend too much time on here when I need to be doing other things. But without it, I'm afraid I'd be so lost and clueless, and that is a scary thought. I remember when I was first dx'ed and found the forum, it was such a relief to see the many different manifestations of the disease and realize that I was doing pretty well, that it could be a lot worse, and that there was hope for returning to a fairly normal life. Of course, I know some people have a more severe case and I don't know how they feel about this. But there are some on here who have almost died and are now functioning quite well in life. Having access to information and communicating with those who have been there makes all the difference in the world, I think. And you will probably think about it less as you get WG under control and can resume more of your former activities. Best wishes to you!

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Originally Posted by Marius

Don't you guys sometimes feel -especially with the forum and all- that you are getting too much involved into this disease?

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unfortunately, this disease "involving" me too much :sad:

Quote:

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Originally Posted by Marius

Hi all

Thank you so much for welcoming me! It feels great to not be alone out there anymore. The doctors made such a fuss about the rearity of this disease that I was left feeling all alone and dreadful. This forum is absolutely great for gaining knowledge about WG and learning from people also suffering from it. Although a bit gross, I loved the thread about boogers! The same stuff comes out of my nose - and again it made me feel so much better that it's not just me.

I use a sinus rinse for my nose, but I think I was over doing it a bit as I now have an infection in my left ear. Luckily I'm seeing my ENT tomorrow, so hopefully he can do something about it. Although this ENT was great in making the right diagnoses right away, he admitted that he has no experience with this disease and referred me directly to an Internist. My problem is that between this Internist and the Rheumatologist, nobody seems to want to take charge and both wants to be seen more as in an advisory role. Perhaps this is why I am currently on both MTX and Imuran. I will definatly take this up with them.

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Welcome to the forums Marius!

I am glad you enjoyed the booger thread. After about a month of treatment, and a couple of ENT visits, I no longer am getting any "Monsters" coming out of my nose. The sinus rinses are very important for me, as I believe they, combined with good treatment and the right medicines, are what has prevented any further crusting and huge chunks from coming out!

I have a few doctors now, and I have found that the most important thing for them to do is COMMUNICATE with each other. All of my doctors are on the same page, and nobody is stepping on each others feet.

It is great to hear that things are improving for you, and I am sure that they will continue to improve!

-Spaceflightaddict