Query Taptiqom

[Maximi]

Hi. I was diagnosed with Glaucoma a few years ago and have used Monopost since then.I recently changed hospitals and the new consultant has said that I don't have Glaucoma! I do have raised pressure in my eyes and he has changed my drops to Taptiqom even though the pressure is down to 19.

I am not happy about these eye drops as they have a beta blocker in them. I have tried to contact the consultant with no joy.

Has anyone used Taptiqom and how have they got on with them? The possible side effects sound horrendous and I still haven't started them because I'm worried.

Thanks

[Samueltree]

Hi,

I am on latanprost, preservative free Monopost for high eye pressures.

Mine are borderline ok at 21. I do not have glaucoma.

I have primary angle closure, iop ocular hypertension.

If I were you , I would consult previous consultant at previous hospital either by email, their secretary or by phone. All consultants have personal secretaries. Explain the situation.

At your present hospital I would do the same, consult consultant via phone, email or actually go in!

I also think if you wrote a letter, they have to reply. I read somewhere there is a certain time limit within which they have to reply to you.

I have refused several eye treatments recently. Asked for second opinions, which you are legally allowed to request. I now refuse to see anyone other than the consultant I presently have. I told him exactly why too.

Our eyes are precious. I do all I can to ensure I get the best for my eyes.

Do not accept anything you are uncomfortable with.

There should be someone in the hospital you can contact to explain all your concerns. Enquire. Telephone receptionists or enquiry office in hospital should be able to point you in right direction.

You may be told you are wrong to make a fuss, but if your intuition, gut feeling, says their advice is wrong, it possibly is.

You can always seek advice from opticians or go private if you can afford it.

Or, see your own GP. I know that is not easy, takes weeks sometimes but …

I wish you luck.

[Maximi in reply to Samueltree]

Thank you for replying. I have been on Monopost for several years with no problems.I am concerned that after being diagnosed initially with Glaucoma, that this consultant has said it isn't that.

I have been trying to contact him for over a week. His secretary has emailed him twice ( he only works at my hospital once a week and of course, over Christmas is difficult). He is working over the holiday though and I'm annoyed that he hasn't replied.

I am persevering though as I have enough Monopost for 2 months. He has written to my GP to change my prescription so I don't know what will happen now.

The issue with Taptiqom is that I have other health problems ( not heart related) that weren't discussed before changing the drops.

[Piggy-in-the-middle]

What are the side effects that worry you? Most are uncommon. Taptiqom contains Timolol which is the usual betablocker. I’ve used it for more than 10yrs without any problems. I find that communication is the real issue with consultants and glaucoma is difficult because so little is known about its cause. What matters is how much damage has been done to the nerves carrying the signal from retina to brain. This can be observed by inspection, and everyone has some damage with age. Eventually you will notice your deteriorating vision. Eye pressure is just one symptom but it is the symptom that can be treated. I encourage you to use the eyedrops and ask more questions, good luck!

[Maximi in reply to Piggy-in-the-middle]

The problem is that although I was originally diagnosed with Glaucoma some years ago by another consultant, he is now saying it isn't but that my pressure is raised. It was 21. But it is now down to 19 . I don't consider this is high enough for a beta blocker.I also have Macular Degeneration.

My issue with Taptiqom is that I have other health issues, although not heart related, that it could affect, but I was not asked about these at the consultation.

I have been trying to contact him via his secretary but he is not answering her emails. He only works one day a week at my hospital.

[FrenchSonya]

Hi Maximi - I agree with what Samueltree says 100%. I also use preservative free Monopost (Monoprost here in France where I live), have similar eye pressures (around 21 - for years now) and seem to be fine using this. I started out on drops with a beta-blocker in them and switched when I found myself breathless - I was unable to walk up a short flight of stairs without becoming breathless! I feel so much better on Monoprost, but all of these glaucoma meds have side effects - some worse than others. I have switched consultants 4 times now - the previous 3 wanted to put me on combinations of glaucoma meds with awful potential side effects, which I refused, preferring to find an alternative specialist. My current one is conservative, I know I'm not going to be able to discuss anything as "alternative" as taking supplements (!), lifestyle factors or home tonometry (not heard of here at all), but he's not freaking out about my (stable) IOP of 20/21/22, and is happy to leave me on Monoprost with its apparently minimal side effects (for me). I also see my optician in the UK at least annually to get checked out, and get a British perspective on things. I've also been told (fairly recently) that I probably only have glaucoma in my right eye (but must continue to take the drops in both).

To go back to what Samueltree said, try to see your original consultant by whatever means possible - the value of having someone that you feel you can trust, and is "on your side" is invaluable. I have found many to be aloof or dismissive. I realise that the system is different in the UK - we have direct access to specialists here, which can be great, but can also be confusing and take a lot of time to get an appointment even (with horrendous months-long wait times if they accept new patients at all!), so it's not all good... A glaucoma diagnosis is a strange one... I was so scared initially (nearly 15yrs ago now), and it still seems to be a rather mysterious, not well understood or researched disease, but I'm not scared of losing my sight anymore (tho I would like to avoid eye surgery of any kind...). Hang in there, and prepare to be persistent, don't get fobbed off by your doctor or the hospital. Good luck... 👌😊

[Maximi in reply to FrenchSonya]

Thank you for your reply. My pressure was 21 a few months ago. He left it for 3 months to get a field test done and when I saw him 2 weeks ago the pressure was down to 19 but he still changed the drops. I don't feel that a beta blocker is necessary at that level.I have been fine on Monopost for years.

I am going to persevere and am trying to find a private consultant in my area but as I don't drive it's difficult

[valfrance in reply to FrenchSonya]

Hi sonya im english and live in the south of france near grasse..my consultant is at monaco hospital, can highly recommend. No problem getting appointments around here. Valfrance

[whitedog]

Hi

I struggled with Timolol on its own but was OK with it in a combination drop when changed to Cosopt.

All drops have side effects. But the difference between taking a drop and not taking it can be dramatic. It's not worth risking optic nerve damage and it can happen without you knowing.

If you try a drop and experience intolerable side effects then at least it helps your consultant plan your treatment going forward.

[USME]

Glaucoma is a very complicated disease or as recent research suggests a combination of "conditions". It is extremely individualized on how it affects each person. I continue to struggle daily for nearly 40 years with many complications, many surgeries, many doctors. I find it interesting when you say you've been told you had glaucoma but not now, but you have pressures of 19-21. By definition, glaucoma is raised eye pressure. Any, every eye doctor I know would consider pressures of 19-21 a diagnosis of glaucoma. Good luck in your journey.

[Beechdown]

I have not used Taptiqom but was prescribed Flixaprost which is very similar (Timalol plus a prostaglandin analogue ) after a few years on Latanaprost as the pressure in one eye had increased to 25. I too was nervous about the Timalol.

As I had collected the drops and it was only one eye, one drop I decided to give it a go being very careful to press my tear duct and not get any on my cheek or hands. Rather quickly my already lowish blood pressure and in particular heart rate reduced significantly and I also experienced a flare up in a hand condition. With a bit of research I discovered that these side effects though uncommon were possible for someone with my heart rate and hand condition. I stopped the drops and reverted back to Latanaprost in both eyes and told the clinic. No one got back to me. At my next appointment thankfully my pressures were 18 in both eyes. It was felt I would struggle with any drop that reduced blood pressure so I have been put back on Latanaprost in both eyes and been put on the list for SLT.

Note that everyone is different and side effects in my case specific to my existing conditions. If you are worried about the effect on your other health conditions I would try and discuss with the clinic.

Good luck.

[Maximi in reply to Beechdown]

I'm still struggling to get any reply from my consultant. Two emails have been sent by his secretary and another colleague. No reply to either.He only does one clinic a week at my hospital but you would think he would reply to his secretary!

My situation is that I have an overactive thyroid and the leaflet says to check with Dr before using Taptiqom. I have checked with endocrine consultant and was told I can use it but with caution!

They obviously can't change the Taptiqom so I'm stuck.

I am going to ring again on his clinic day in the hope she will actually go and speak to him.

I am at a loss what to do after that. I have enough Monopost for 2 months but would really like to sort it asap due to the length of time it takes to get an appointment with my GP even if they would help, which is doubtful going on past experience.

I am trying to find a private clinic near me but not having any luck as I don't drive.

Any suggestions as to my next move would be appreciated.

[Maximi]

I finally got a call from his secretary today. She had spoken to him abour my concerns but he still insists that i can use Taptiqom. I am still reluctant but have decided to try them as then if i have problems, i have a valid reason for refusing.I have enough Monopost to be able to use them until my review in 2/3 months if necessary. I can speak to him then about changing back to Monopost or something else.

I know i could refuse to use them, but then he could refuse to prescribe Monopost.

I would like to change hospitals but it takes so long to get an appointment in my area. I waited 18 months at my original hospital so can't change back to them.

I have done my best with this compromise but am still very nervous about starting Taptiqom.