UK Keratoconus Self-Help and Support Association

Hi
I had my graft in September and everything was good for the first three months.But when I went in for my check-up in mid December my pressure was up at 46 I think. so I had diamox tablets for 3 days and was put on maxidex twice a day and trusopt and xalatan. So when in after about 2 weeks and the pressure was going down it was at 32.Then I went in for a follow up on the 8th Feb the pressure was up again. the consultant took me completely off maxidex (anti rejection) now I'm on Diamox tablets three times a day, lotemx(steroid drops) twice a day, cosopt drops twice day and xalatan once before bed. The problem is since seeing my consultant and starting this new regime of medication i have been feeling unwell. i anm experiencing really bad headaches which don't seem to go even after taking painkiller or sleeping. I feel a thud of pain on the back of left side of my head .but my right eye is the one with the raised pressure. Ans at times i'm feeling just shots of pain in eye or around it. I'm going to see the consultant in 2 weeks hopefully . I was just wandering if anybody had any advice or knows anything helpful.

Hi Saima

Sorry that you're experiencing high IOP and then, as it that's not bad enough, side effects from your drug cocktail.

Have you been able to spend a little while studying the Patient Information leaflets which the drug manufacturers supply with their products ? It's entirely possible that the symptoms you're getting are mentioned specifically there. I know they're not the most fun things to read, but it's well worth familiarising yourself with all the advice the companies provide -- it'll set your mind at rest that what's going on is expected, if not entirely pleasant.

The finger of suspicion would seem to point at the Xalatan -- see http://www.drugs.com/sfx/xalatan-side-effects.html -- which specifically mentions, to quote "Nervous system side effects have included postmarketing reports of dizziness and headache". This would also explain why the analgesic painkillers you're trying have little effect. And even if you're using the medication in one eye, it doesn't stay there and you can definitely get systemic side effects not just localised ones from using eye drops.

The other things you've been prescribed aren't exactly a barrel of laughs either -- there's as always useful (if potentially a little hypochondria-inducing !) information on line if you've lost your Patient Information leaflets:

http://www.drugs.com/pro/lotemax.html
http://www.drugs.com/mtm/diamox.html
(you can search the same site for Cosopt, I'm only allowed three links per post by the forum software!)

I'm not a pharmacist or physician so unfortunately I can't give anything by way of specific advice. Definitely worth advising the person looking after you in the clinic that you're getting quality-of-life impacts from what you've been prescribed. You can always ask for a drug review. This is where you get a revised set of thinking on your underlying condition and how best to treat it. It is a process which is intended to stop the "Drug A causes side effects. So you get Drug B. Which causes side effects. So you get Drug C... etc. etc." cycle. As the root cause of your problems is the Lotemax, changing that to something which doesn't raise your IOP (or raises it less) is a possible answer. But then, I'd guess there was a reason why your physician prescribed that as opposed to the more typical Dexamethasone (Maxidex is a branded version of Dexamethasone which is the generic name). It seems likely that you got high IOP with that too, hence trying Lotemax. Personal experience has led me to think that Fluorometholone might be worth a try as it claims to have less chance of inducing high IOP. But medicine is such a complex subject that I tend to come down on the side of leaving the professionals to do their job rather than trying to do it (badly!) for them. If you do discuss this with your clinician, and the answers come back that there's nothing else left to try, them maybe do the dreaded "I read about it on the internet..." and ask about Fluorometholone.

I really do hope it all starts going a bit better for you soon. It knocks you back doesn't it, when you think you've been doing okay, then get a setback.

Best wishes, take care

Chris

Hi again... just one other point, re the Diamox, forgot to add this important thing I noticed earlier when looking at the drug information (emphasis mine):

What other drugs will affect Diamox (acetazolamide)?

aspirin, salsalate (Disalcid, Salflex, Salsitab, others), choline salicylate (Arthropan), magnesium salicylate (Doan's, Magan, Mobidin), and other aspirin-like products (salicylates). These medicines may also interact with acetazolamide, and special monitoring of your therapy may be necessary.

Drugs other than those listed here may also interact with acetazolamide. Talk to your doctor and pharmacist before taking any prescription or over-the-counter medicines.

.. appologies, that was the most important thing and I forgot it (was in a rush, that'll teach me !)

Whether you're taking asprin for the headache specifically, or a related product like ibuprofen or paracetamol, it seems there is a possibility that it may interact with Diamox. While I'm not qualified to say "don't combine the Diamox with painkillers and stop taking them" it's a good idea to check with the pharmacist or the clinician who knows this medication well. I don't know whether paracetamol, ibuprofen etc. are in the salicylates class of medication, my cluelessness knows no bounds on this subject so it could also be you can take them without problem. But best to check I think.

Kind regards

Chris

Hi Saima

I had my graft in May and like you I have been having high IOP. Couple of weeks ago it was at 40 and they put me on Diamox tablets four times a day. Within two days I was suffering from stomach cramps, back pain in the Kidney area, vomitting and unable to go to the loo. Went to the GP in complete agony and he pulled me off the tablets.

I am currently on Lumican once at night (given me dark skin around the eye and thick eye lashes). Cospot one in the morning and one at night. Iopodine one in the morning one at night.

I was using Dexemathasone as a steroid and they think that I am responding to that. Gone on to Vexol instead. Readings seem to come down. Went to eye casualty three dats after swapping and it was down to 30. Had an appointment with the consultant a couple of days after that and it was 24. Back on the 27th of Feb so fingers crossed. I also have an appointment the day after with a glaucoma specialist but hopefully that won't be needed.

It does seem at times that they just throw all the drugs they can at it and not a structured approach. At one point they were talking of putting me on anti rejection tablets instead of drops but they seem to have pulled back from that thank goodness

Keep us informed how you get on

Ian

I agree with you Ian, sometimes it seems like it's just a case of dishing out the pills/drops and hoping it all works out. I'm sure I'm being grossly unfair, it's just that it seems that way for some people with grafts during the post-graft recovery phase. Diamox certainly looks to be at the higher end of the toxicity range so you'd have thought it would definitely be a last resort. I'm going to add it to Anne's "what would you like to see researched" thread. Looking at the people who've reported high IOP post-graft here on the forum, it seems that there's not an awful lot of consistency in the approaches taken -- and that Diamox in particular isn't that well tolerated so maybe it needs better advice to patients if prescribed.

And, as usual (I'm about to get on my soapbox, beware), there's not much attention paid to non-medicinal aspects of patient wellbeing and things that you can try to improve your situation outside of conventional drug therapies. Such as:

* Exercise. Some sorts of exercise may increase IOP but some seem to result in a decrease in intraocular pressure. Exercises which may do the latter are walking, jogging, and running
* Fluid intake -- getting enough water is important and you definitely don't want to become dehydrated
* Caffeine and alcohol -- caffeine is directly associated with increases in IOP. Alcohol reduces it for a time but the subsequent loss of hydration won't do you any favours so I'd say avoid it
* Psychological stress -- the evidence is patchy and IOP isn't correlated or causally linked to blood pressure but in some individuals it is suggested that stress does influence IOP although the mechanism isn't known. For me, it's common sense that you should avoid stressful situations if you're susceptible to IOP issues -- and if you need to take a few weeks off work to see if that reduces any high IOP then that is what you should do.
* Nutrition
* A healthy sleep pattern

(Saima, sorry to hijack your thread -- the point about fluid intake is particularly valid with the medication you're on -- for Diamox, the Patient Information advice is to drink more fluids than usual to prevent dehydration and headaches).

Best wishes

Chris

Hi Chris,
Sorry for replying so late.I've been so busy.

so I after I first posted my side effects started to wear off slowly and I haven't really been experiencing to many problems. I think it was just my body needed time to adjust to all the new medication. The headaches and sleeping problems gradually faded after the first two weeks of the new medication. I had a follow up at Southampton general yesterday and my consultants says the meds are working and the pressure is at 89 so it's normal now.And i can come off the diamox tablets.

He also told me I will be able to tell when the pressure is up because my eye will go red/sore or I will see halos around lights(like before the graft). soo all is good for now.

It's such a nice feeling after going to a appointment when you leave with a positive good outcome . Every time I go to the hospital i always feels a sense of dread/anxious feeling at the pit of my stomach i just can't help it. The whole hospital experience makes me feel ill. Does anyone else feel like this ?

best wishes
saima

p.s Chris hijack my thread anytime, it's cool