Ticilizumab Infusions

[angel-delight]

Hello to everyone who has been following me in regards to the infusions. I was told last Tuesday that my liver function test was high, changed from 43 to 75 as part of my blood test before having 2nd infusion. I received another call last Friday to say the Consultant has agreed to me having the 2nd infusion Tuesday 7th July. My first infusion went very well, no side effects. I will drink lots of water, more than normal on Monday and Tuesday, especially, with the hot weather.

Just the last couple of days I have felt more pain in my right side, neck, hand and foot with stiffness in the morning. I am not surprised as I have reduced the prednisolone now down to 10mg and I take oxycodone 30mg at night and in the morning. I have reduced the morning dose to 20mg.

I have only one concern and that is blurred vision from time to time throughout the day. I called in to Specsavers as I am due a yearly eye test and explained what was happening. I was told to wait to have the eye test until I am on a balanced dose of steroid which is to be 7.5 mg until I see the Biologics apt on 5th August. I expect she will speak with the Consultant as in past appt's to discuss what happens next? If I can have the 3rd infusion it is scheduled for August 6th. I don't know if the Consultant decides to continue to reduce the steroids or keep me on 7.5mg. The optician said the blurred vision is caused by the steroids but the change in my vision didn't start until I started to reduce the steroids by 2.5mg weekly.

Has anyone else had a problem with blurred vision whilst on steroids or Tocilizumab infusions?

I hope everyone is ok and enjoying the warm weather and not suffering more pain.

Take care, wishing you all well. xx Sue

[alibromo]

Hi Sue. You are going through it arn't you :-(. I know how you feel. I have blurred vision my opp prescription has changed & i am wearing my glasses alot more. Hope things get sorted for you very soon xxAlison

[angel-delight in reply to alibromo]

Hi Alison,

Thank you for your response to my post. I checked with optometrist last week and was told to come back when my steroids have levelled off or I would need another eye test to make sure I have the right prescription. I have to wear glasses full time (bi-focal). I even find it difficult to watch the TV.

I am going to go back and make an apt for an eye test before I go away.

Also, Shazbat went on google and checked regarding blurred vision and steroids.

Take care, hope your blurred vision clears very soon.

Sue xx

[shazbat]

Hi Sue sorry to hear your having some problems my friend. But if it helps I have now weaned myself off the steroids and I have to say I felt rotten while doing it. However when I googled it I saw that many people had the same issues. My flushes have now virtually disappeared since I came off them and my breathing has improved. I finally stopped the 2.5mg 2 weeks ago and feel better and better every day. My toczilimab injections have been really effective. So I hope everything starts improving for you.

Take care

Shazbat x

[angel-delight in reply to shazbat]

Thank you Shazbat, my vision is worse in the morning, like now I am struggling to type this message so I will keep it short. I will google later, but the optometrist said it would be the steroids. I appreciate your info. Good to hear you are doing so well on the infusions, I hope to be off the steroids soon too.

Take care, Shaz. Good to hear from you, Sue xx

[angel-delight in reply to shazbat]

Hi Shazbat,

I went to get my eyes tested this morning and the optometrist gave them a thorough testing due to my concerns regarding the possibility of having glaucoma. I was assured I don't have glaucoma, I do have the start of cataracts but a long time away from needing anything done as yet. I do need a new prescription as it has changed dramatically, so I have ordered 2 pairs of glasses and should be ready next Monday. Relief to say I don't have glaucoma. I went to see my GP this afternoon as my swollen legs looked inflamed, I was told I have cellulitus and he has given me antibiotics and if it doesn't look like it is starting to improve in the next couple of days I have to see one of two GP's in the same practice that specialise in this type of condition. I will have to contact my Rhuemy clinic in the morning as this will probably mean I won't be able to have my next infusion on Wednesday. After all the messing about with cancelled appointments. I am hopingthe cellulitus will clear before I go away so that I can have another infusion. I will have to see what they say?

I knew everything was going too well as far as side effects.

I hope you are keeping well. I will keep in touch and let you know how I get on tomorrow.

Take care,

Sue xx

[shazbat in reply to angel-delight]

Sue I'm so sorry your going through a real run of bad luck. At least you know your eyes are fine and they have caught the cellulitis quickly. This is what people don't understand about RD and its consequences. I really hope they get it sorted so you can go and see your family. Something to cheer you up a bit, I woke up early hours of Saturday morning with terrific pain in my shoulder. I thought oh no my meds are not working after all that hassle, so I went to turn over and realised I couldn't move, we have wrought iron headboards I then realised somehow I had woven my arm into the headboard and trapped my shoulder lol. Took me 10 minutes to untangle myself and no I was not drunk.

Please let me know how you go on Sue.

Take care

Shazbat x x x

[angel-delight in reply to shazbat]

OMG you must have had a fright thinking your meds were no longer working. How on earth did you manage to get tangled up with the headboard!! Are you sure you hadn't been drinking.

Is your shoulder still hurting or has it settled down?

I am hoping the cellulitis will settle down in enough time for me to have an infusion before I go away. I am going to call Rhuemy this morning, one to cancel my appointment for tomorrow and to find out if I will be able to keep the following appointment the week before I go away, knowing my recent run of bad luck the answer will probably be no....

I am going to visit my sister later who can't get out very much as she is disabled before I go for my INR blood test in the afternoon but I will let you know how I get on later this afternoon.

I really do hope you are OK Shaz, no more exciting dreams tonight, were you watching a good movie before going to bed?

Take care, Sue XXX

[shazbat in reply to angel-delight]

Ha ha I put my arm under my pillow and somehow wove it through the iron. So my arm went dead and my shoulder was pressing against the wrought iron. It's a stupid headboard. Because my arm was dead I didn't notice until I tried to turn over. My shoulder is fine, my husband and friend couldn't stop laughing. Let me know how you go Sue.

Take care

Shazbat x x

[angel-delight in reply to shazbat]

Hi Shazbat, I promised to let you know how I got on when I contacted Rhuemy Clinic. I explained what happened at my GP and that he had put me on antibiotics for a week and the guy who is the coordinator for the infusions said as I thought he would that the infusion for tomorrow will have to be cancelled. I have to give him a call next Tuesday to let him know how I am, if all is well I could possibly have an infusion before I go away. That would be better if I could have an infusion the week before. I think the consultant will probably want to keep me on the steroids until I return from my trip. My shoulder is hurting tonight,that's because I had a laugh at your earlier message. :-). Actually I had to climb the stairs at my sister's house to use the bathroom. She has a stairlift but I used the stairs for exercise but because my legs still feel weak I pulled myself up using the handrails.

Fingers crossedthe cellulite will clear up if not I make an appointment with one of the doctors in the clinic as my GP said specializes in this sort of condition. I hope it clears soon, although my HP didn't say I couldn't fly when I asked him to write a letter to attach to my medications.

I will keep in touch. Hope you are OK , take care, speak to you soon my friend and thank you again for your support and for making me smile.

Sue XXXXXX

[shazbat in reply to angel-delight]

Your very welcome, I hope you can still have the infusion, it's lucky your GP practice specialises. Get yourself loaded up with drugs and get on that flight you have been waiting for it. Please let me know how you go on, my injections are still working, although not good for headboard injuries lol.

Speak soon

Shazbat x x x x

[bassiefromholland]

Hi Sue, inwill have my 4th infusion on thursday the 9th of july. Sofar no side effects too. No blurred eye vision. Only thing is stiffness and pain in the morning, in the afternoon and evening it is better.

Wish you all the best

Xxxxx

Bas

[angel-delight in reply to bassiefromholland]

Thank you for your reply, is good to hear from you. Good luck that all goes well on Thursday. I hope you don't have any side effects again. I think drinking lots of water does help.

Take care, Sue

[angel-delight in reply to bassiefromholland]

Hi BA's, how did you get on, on Thursday with your infusion? I hope you feel better and don't have any side effects. I didn't get my infusion last Tuesday as the nurse called in sick. It was scheduled for this Tuesday and then I received another call to ask if I could make it this Wednesday as they have arranged for another nurse and can only do Wednesday, the other nurse may be off sick for 3-4 weeks?

I wish you well Bad, take care.

Sue xx

[bassiefromholland in reply to angel-delight]

Hi Angel, thanks for your mail! What a pity that you didn't have your infusion. Hope you will get it on wednesday!

I have no side effects sofar, but my Rheumy is not satisfied with the results so I have to start with sulfasalasine together with the infusions. I also am on prednisolon.

Wish you succes next wednesday! Enjoy your sunday.

XxxBas

[angel-delight in reply to bassiefromholland]

Good morning Bas,

I hope your infusions will work better for you with the addition of the new meds.

Fingers crossed for you.

Take care, Sue xxx

[shazbat]

I have had 2 eye tests in past 12 months Sue I was convinced my eyes eyesight had deteriorated but they told me prescription exactly the same. So I have been off the steroids 2 weeks now and I have to say sue I'm feeling a lot better, my moon face is nearly gone, plus I had an enormous neck that is now going.

Hope it gets better for you my friend x x x

[angel-delight]

Thanks again shazbat,

it is always good to hear a positive response to the infusion, I am hoping I will be as lucky as you, so far so good. I am due for my eye test so I think I will make an appointment before I go away. I can't wait to come off the steroids but I know we have to do it slowly. I have been weaned off the steroids a couple of time but only 2.5mg monthly from 20mg to 12.5mg and then they had to be increased again. I feel that I am doing really well after only one infusion and the steroids are down to 10mg.

Next Wednesday I will be taking 7.5mg and stay on that dose until my 3 month apt at Rhuemy Clinic on the 5th August. My 3rd infusion is scheduled for the 4th August before I go away. That is if my blood tests are ok!! I am hoping this next infusion won't increase the liver function test, my INR reading changed but came back to normal in 2 weeks.

Fingers crossed for Tuesday's infusion, I will be drinking lots of water, it worked last time as I only had a sight headache above my right eye, again, I had those before I had any infusion.

Take care, glad to hear you are doing so well, my friend.

Sue xxx

[LS1957]

I have my fourth infusion tomorrow each time my LFT is raised so far they have done the infusions but not sure how much longer they will x if I am honest my last infusion did not work quiet as well - I have been mega busy so hoping that's the reason - it's a continual waiting game x

[angel-delight in reply to LS1957]

Thank you for your response, I have had a good response to my first infusion, hopefully, the 2nd one will be too. Can you tell me how high LFT readings were, mine changed from 43 to 75. I am concerned about the blurring vision which I was told could be due to taking prednisolone for about 2 years.

Take care, hope your next infusion works for you. x

[Hidden]

Hi, I started to get problems with blurred vision etc about 18 months ago - it turned out to be glaucoma which has been blamed purely on my steroids. I have been on 15mg daily for nearly 5 years. If I was you, I would run (or limp!) rather quickly to have the full 3 or 4 (I can't remember the number) tests for glaucoma - I had no idea it was a side effect of the prednisolone. Good luck, Virge

[angel-delight in reply to Hidden]

Thank you, I will make an appointment asap, Thank you for your response, very much appreciated. Take care, Sue

[angel-delight]

Hello again,

I received a call this afternoon to let me know my infusion tomorrow has been cancelled due to the nurse calling in sick. It has been rescheduled for next Tuesday instead. Under normal circumstances I wouldn't be bothered but I doubt now that I will be able to have a third infusion before I go away. I hope that the second infusion will last until I return. I was scheduled to have the third infusion on the fourth of August but that is less than four weeks and as the infusions can only be given monthly I really think I will have to be satisfied with the second one. I know it also depends on the blood test coming back clear as well. I guess these things happen, can't be helped... They don't have a replacement nurse to step in who can do the infusions at the hospital.

Best made plans gone to pot!!

Take care everyone hope you are all feeling less pain now it is much cooler. Sue xx

[shazbat]

I'm so sorry to hear that Sue. But it is ridiculous. As you know I had to fight to get the injections so I could live my life the way I wanted too. I was adamant that this condition was not going to control anymore of my life than it already does. The problem is we need to convince the NHS of that, we are made to feel guilty if we suggest that we also have plans. Our treatment has to help us to live a normal a life as possible, not to have total control, sue darling there is not only one nurse who can do infusions in your authority, I know you want to go and see your family. So make the NHS work for you, tell them sweety you have plans and they will have to find someone.

Love Shazbat.

[angel-delight in reply to shazbat]

Hi again shazbat,

I have just spoken with the clinic she has arrange for me to see another nurse who is replacing the nurse who usually does the infusions but can only do a Wednesday as she has another job. I now have an appointment for the Wednesday, next day at the same time, that's if they don't cancel again. Apparently, the nurse who would normally do the infusions could be off sick for 3-4 weeks and they have to re-arrange all the appointments. I do understand that people can't help getting sick but they need to get someone in who can replace on the Tuesday and Thursday, not just a Wednesday, surely that would be easier than having to rearrange everyone's appointments.

I also explained that this will caused me to miss out on having an infusion before I go away. The problem is this nurse can only work on a Wednesday and I fly on a Wednesday!! It will be a very long time without the infusion and now I feel bad that I will be away for 6 weeks as I started to feel so much better just after having one infusion I will probably feel like I am starting all over again.

Take care, shazbat, I am so pleased that things are working out for you and you are feeling so much better. They keep saying that stress is really bad for us and the RA/D but they keep causing us to be stressed. Like you, all I want is to get my life back again.

Sue xx

[kerpag in reply to shazbat]

Having infusions but the hospital pharmacy have not yet sorted out the injections. Was initially told 1 or 2 infusions before starting injections but am having my 5th next week. Did you get the injections easily sorted out?

Kerry

[angel-delight in reply to kerpag]

Hi Kerry,

No I am still on infusions, well I should have my second infusion next Wednesday if they don't cancel again. I was told the same, that I will be able to have the injections after having a couple of infusions. I think they are still sorting out funding. It is ridiculous as it would be far better as we would have better control and especially when I have to wait to get the infusion because the nurse called in sick and they had to cancel my appointment until they could arrange for another nurse to do the infusion.

I wish they could get the injection funding sorted, it would be so much better. Good luck hope you get yours sorted very soon. Someone else on here had to push very hard to get the injections, we shouldn't have to. She did get them in time before going away. Please let me know how you get on. I see my rhuemy nurse on

the 5th August. Take

care, Sue xx

[kerpag in reply to angel-delight]

Can't believe how you're being mucked about through staff sickness. Going to have this infusion then start fighting for injections. Not got the staff at my job to keep disappearing! Good luck to you

Kerry

[angel-delight in reply to kerpag]

All the more reason to get the injections sorted and this would take the pressure of the hospital.

Sue

[shazbat in reply to kerpag]

Hi Kerry, if you read my posts you will see I had to fight for the injections. I even postponed my honeymoon. Then I got angry. Large parts of the UK have the injections, I complained to everyone, once it's gone through the relevant committees it's just a matter of the pharmacist sending BUPA a contract, start complaing to Pals but I worked out the address for the Chief Executive so copied her all the emails. It's cheaper for the injections, appointments are not cancelled because nurses are on the sick and you get your freedom back. Don't take no for an answer.

Shazbat

[angel-delight]

Hi Shazbat,

If that wasn't bad enough to cancel last Tuesdays apt, they left a message on voicemail yesterday to cancel next Tuesdays appt. I am furious as I now have to call them back this morning as the clinic was closed by the time I got the message. I will let you know how I get on....

Thanks for your reply Shazbat, take care, I now want the pens so I have control of when I get the

medication.

Sue xx

[shazbat]

Sue my love don't let it go. Put a complaint in through pals. You have a right to live your life. They can transfer you to another authority for the infusion. Let them know your going to put complaints in. Mention you MP. And the chief executive of the authority. I accept that there can be delays. But this is an nasty illness. You want to see your family, make that clear. Please let me know how you go x x x

Shazbat x

[angel-delight in reply to shazbat]

Hi Shazbat,

I did let her know I wasn't happy with the cancellation, I think it all comes down to cost most of the time. I don't like being messed about when it comes to appointments, I am not the type of person who doesn't show for appointments ad doesn't bother to cancel so I like to be to be treated the same. The lady I spoke to did promise to check with my consultant to see if I will be able to have another (3rd) infusion before I go away.

This is another reason yet again why we need to be able to have the injections and do them at home or whilst we are away.

I will give her the chance to get back to me hopefully tomorrow, but it will also depend on the next lot of blood tests and the liver function test.

When I had my first infusion, one person cancelled and another just hadn't turned up. I find that annoying as those times could be used by patients who are in a lot of pain and waiting to have an infusion.

Take care, sleep well and enjoy your time away. I hope you keep on improving each day.

Sue xxx

[shazbat]

I agree Sue it's disgraceful when people do not turn up. Everyone has mobiles so a simple phone call would cancel the appointment so someone else can take it. I do hope it's sorted for you, use this example to argue why you should have the injections. The head pharmacist who deals with biologicals in my authority gave me chapter and verse on do's and don't' for travelling abroad with injections. Until I pointed out many patients had been doing this for years. Because despite our conditions we do live our lives when possible. I just received fantastic news they found nodules on my lung last year but didn't know the cause. I had another CT scan before I came away and they have not grown so now it's confirmed they are due to my RA and not something more sinister.

I hope they treat you right x

Shazbat x

[angel-delight in reply to shazbat]

Hi Shazbats,

I had the similar, but it was a cyst on my ovaries. Nothing has changed since they found it on an MRI for my back. I had, had it for at least 12 years and I had several ultra sounds since I had an operation for an abscess that burst to monitor for any changes. I had told my GP about this but he failed to inform Gyno. The specialist in Gyno said he wouldn't have done anything further had he known. I've had RA for about 18 years, just something else we can blame RA for.

Take care, Shazbat.

Sue xx