Has anyone else been prescribed high dose steroid treatment for IIH?

I had an LP 2 weeks ago. Opening pressure 41 and was drained to 21. My vision is much improved even now. But the pain returned pretty quickly and by Thursday last week was intolerable. I saw a different GP who said to try 8 prednisolone steroid tablets a day for four days in addition to my topiramate and Furosemide. What a difference it made! The pain was much much more manageable. It was a minor miracle.

But when the four days were up the pain returned just as bad as before. I went to the emergency doctors tonight who agreed that I could have the steroids back for four more days until my GP could contact the neurologist. I just wondered if anyone else had used steroids and how long term they had been used for. They clearly gave me some relief over the weekend and I wondered if it might be a more long term solution.

I was on steroids for about 5 years, they helped a little, but mainly helped my weight rise quite a lot. I had never been overweight the whole time I was just on medication for the the IIH, but when I had my first LP shunt and it caused immense back pain, they put me on steroids for the pain, and my weight zoomed even though my diet was healthy. I'm no longer on steroids for my back pain as they prescribed me a better more effective alternative, but I am still fighting to get the weight off. Sorry to put a downer on it, but that was my experience with them I'm afraid.

What pain relief are you on at the moment? When I was just on the medication and had high pressure lfare ups I was given co codomol, which was called Tylex then, and it was very effective.

Hi Heidi,

I was on co codamol but the GP felt that prolonged use of codeine based pain relief actual caused headaches. I don't know if that's true. I genuinely felt they weren't making any difference so came off them. In fairness I haven't noticed any difference without them. I have got paracetamol and naproxen but they don't help either.

I really don't want the weight problems associated with steroids - especially as I'm doing so well with my weight. But I can't believe how much better I was over the weekend. I went out and walked round for 2 hours, cooked a meal - I lived like a normal person who just had a bit of a headache.

I have done a bit of research online and found some reference to some people with IIH having inflammatory causes that respond to steroids. As I have another appointment with the GP tomorrow I thought I might ask him what this means.

I could really do with a bit more advice. Maybe nor specifically on steroids but on whether people think I should stamp my feet a bit with the doctors.

After another four days of steroids from the GP I came off them. I was convinced the GP would have to send me into hospital I was so ill. Headache was back with a vengeance, visual disturbances, tinnitus - I was bed ridden. I was begging for an LP it was so bad.

The GP did agree to give me the steroids back again at a lower dose for another 4 days - 6 tablets a day but says that's it. No more after that. But I've been fine since he gave them me. A normal functioning human being. I can see! I have driven my car, I have been out of my house, I went shopping, went out for a meal - I have got my life back. Yes, I have a rather irritating headache - but that I can live with.

I do understand the problems with long term steroid use and I'm not asking for them long term. I have even said I am willing to try a lower dose. But we are going to try and sell out house and put our affairs in order as I am probably going to lose my job. I explained that if they give me these pills it will buy me some time. I could go back to work while we sell up and I could pay my bills. I told the GP I would buy them illegally off the internet if he wouldn't give them me and then I felt awful because I would never risk my health like that. I'm just so desperate. I feel well again, better than I've been in months and I am willing to risk the steroid side effects for the quality of life I've had these last few days.

The GP agreed to fax a letter to the neurosurgeon to ask his opinion but said he didn't hold out much hope. What do you think? If I truly believe its the right thing should I push for it? After all they are the experts they surely know better than me? But how can I go back to being so ill knowing that 6 little tablets a day will make it better even if it is only short term?

Opinions welcome xxx

Hi there,

I really dont have any experience with the steroids :( I understand you desperation though. I am feeling the same way right now. I take the diamox and gapepentin.... it helps some but my head still hurts like hell, some days just as bad as it did before. I have tried the naproxen, that really does nothing... sadly i think a lot of us are feeling the desperation as you are :( I feel like people dont understand, after all I am not terminally ill. but I sure do feel like it, it feels like the quality of life just isnt there. Its hard to understand doctors someimes, and I always wonder if they really know how bad you feel. The only advise that I can give you for this issue is just to not give up, thats where im at now, some relief is better then none. Have them explain in detail why you cant take them. That way at the end of the day you ahve put it at rest and you wont be wondering. Thats my only advise, thats the only thing that helps me to feel at all in control of this. I just need to know, they need to explain. Thats what helps me.............. I do hope you find an answer soon, keep us posted !

hi Penny;
I have exactly the same experience with steroids as you do; when I am on Prednisone, I am almost NORMAL. I have gained a bit of weight but I think I have stabilized. I take it for about a week per month, so that I can drive my kids to see our orthodontist and know I won't "crash". I am very careful to wean off the dose slowly. if you stop cold turkey, yes you will be ill like you have been. lower it by 5 mg per day as you come off, with the last dose being 5mg once a day. you will still have symptoms when you come off but it won't be as bad as going off all at once. the docs don't really know a lot about this as some with IIH actually get worse with steroids, and long term steroids have so many side effects that they don't really think of it as a long term option. but they don't really know how sick we get. sometimes IIH can be a manifestation, sometimes the ONLY manifestation of Lupus. in this setting, it has been suggested that steroids are the first line treatment. I think that if you respond so well, you should ask to be evaluated for Lupus. maybe a Rheumatologist would be OK with putting you on steroids longer term, as that is what they do for those with Lupus. also, if your vision is a problem I would go to the ophthalmologist and I can't imagine they wouldn't be OK with steroids to try to protect your vision if that is the only thing that works. yes, steroid side effects are not good, but you and I know that the symptoms of IIH are so bad that we would gladly take that risk for a normal day, to avoid feeling like death. I am convinced that in this setting, where steroids work so well, that part of what is going on is that we have swelling of our brains, not just poor CSF drainage. so what is making our brains swell? preventing the triggers of brain swelling might be another step to take. this is nowhere on anyone's radar, unfortunately. I am chemically sensitive and I am sure that the chemical exposure triggers the brain swelling. I think stress does too. I also do well sometimes with Lasix, which might be working similarly to reduce fluid in the brain. so I take that as I wean down the steroids and the symptoms start coming back. do you have swelling of your legs? apparently this is associated with IIH. when I push on my lower leg, it leaves an indent. I swear if I could do that to my brain it would look the same way.
I hope this helps.
Deb

Thanks so much for your replies. The Lupus angle is interesting - Thanks Deb - will do a bit of digging on that today. I don't get the swelling in my legs when I come off the steroids but I am on Lasix 80mg a day anyway so maybe I wouldn't?

In a way I am angry that they gave them to me in the first place. It seems so cruel to give me something that almost seems like a cure and then tell me I can't have it. But I am grateful I have been so well these past few days - its been wonderful

Deb- we have a really useful website called patient.co.uk provided by the NHS. I thought I would have a quick look at Lupus over a morning cuppa. This is why this forum is so amazing. I can't believe my doctor has never suggested testing me for this before! Thank you so much. Even if I don't have it, I do have a really credible new lead. I am so, so grateful.

I honestly don'y know what I would do without you all

here are some of the references you will want to bring to your doc:
http://www.ncbi.nlm.nih.gov/pubmed?term=8608694
http://www.ncbi.nlm.nih.gov/pubmed?term=18320479
http://www.ncbi.nlm.nih.gov/pubmed?term=8528233
and this is the one that suggests steroids first line:
http://www.ncbi.nlm.nih.gov/pubmed?term=22300830

you may want to also have them test you for markers of hypercoagulation while they are at it, as there is an association of hypercoag and antiphospholipid syndrome in IIH as well as in Lupus. there's a theory that micro-clot in the arachnoid granulations may decrease CSF drainage there. there are a lot of markers of hypercoag that are associated with IIH. so my question is whether the steroids just reduce brain swelling or if they are blocking an antibody reaction in the brain that inflames that arachnoid granulation. interestingly, my autistic son whose ICP is borderline, (and has improved with tmt of ICP) has antibodies to the brain endothelial cells. these cells are found in the arachnoid granulation, so are these antibodies influencing the ICP? autistic kids/Landau Klefner syndrome with these antibodies can improve with steroids, but of course IIH has not been identified in autism......yet. there is only one place in the world to get these antibodies tested, it's still being studied, and you have to pay like 400 bucks. or I'd get them on myself because they've been found in moms of autistic kids.

FYI I had a positive ANA (seen in Lupus) and a positive anticardiolipin antibody (seen in APS and IIH) and they both went away, completely negative, after several months of CPAP to treat my sleep apnea. crazy?! didn't help my IIH though, for those to be negative...... I was told by my rheumatologist though that Lupus is a clinical diagnosis, meaning that he has diagnosed it in the absence of the ANA being positive. so if your ANA is negative don't give up; ask to see Rheum. it's a crap shoot though. I don't want to go back because mine blows me off every time and says "everyone feels better on steroids" which is the party line in medicine, apparently. so you may need to be persistent and make sure to describe exactly what gets better and emphasize the pressure in your brain. docs (well all people as you know) have trouble perceiving your symptoms that THEY can't see.
good luck!
Deb

Just to give you a bit of an update.

I saw my GP tonight who took the Lupus think relatively seriously. He ordered some bloods which I'm having taken on Friday. He also agreed to put me back onto 8 tablets a day until I see the Neurosurgeon on the 26th. He has had no response from the letter he sent to him so he is going to write and tell him that he has given me the steroids. I have some chewy bone tablets too.

Thanks so much everybody

Glad that you will have a chance to have some good weeks ahead thanks to the steroids. Watch what you eat just to help keep from gaining weight :roll:

So pleased to hear the good news from seeing the GP. I can hear the sigh of relief from across the pond!!