golitho - Question re - Humira

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SydneyJo
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Date Joined Mar 2006
Total Posts : 1354
   Posted 10/22/2009 3:53 PM (GMT -7)   
Hi golitho,
I notice you take Humira.
I have finally had the application sent to the PBS for approval by my Gastro (Tuesday) and am wondering how long it took you to be approved for it?
I am currently in the Crohn's flare from hell and have bumped up my pred till approval, so am anxious to hear soon, as I have also taken time off work due to this flare (I have till the 1st Dec to get better).
Thanks for any info you can give :-)
Jo
Crohn's Disease
Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone
Bowel Resection Sept. 07


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 10/22/2009 7:51 PM (GMT -7)   
I had to wait three months for other meds to fail before my rheumy could apply. She had me on arava, mtx and sulphursolasine but after 2 months I had leukopenia (low white bood cells) so she was able to apply earlier. I know there are certain conditions you have to meet before you're accepted. You have to have 4 or more major joints inflammed or I think 16 minor joints. That sounds like a lot??? I had both knees, elbows and hips so met the criteria easily. Then you get reassessed every 6 months to stay on it, you obviously have to show improvement. My most marked improvement was in my inflammatory factor which dropped from 2 or 3 hundred to 8. Sorry I can't remember everything.
I still remember waking up to no joint pain or stiffness and being able to run upstairs though. Initially it worked so well. My main problem has been having to stop it for infections and it just seems to take forever for it to kick back in again and never to that initial level.
Goodluck with your application, if I can help in any way let me know, golitho

golitho
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Date Joined Sep 2008
Total Posts : 1670
   Posted 10/22/2009 7:57 PM (GMT -7)   
Sorry Jo, after the rheumy sent in the application It took about 10 days, maybe 2 weeks!!! I'm in a lot of pain today and feeling abit tired so didn't read your post properly the first time. But the chemist doesn't hold it so you then have to order it in to your pharmacy, that takes another day. As soon as you get your script in the mail, ring your local chemist to order it in. I call ahead these days.
You can either get a pen applicator or the injection. I started with the pen but found the caps impossible to pull off so use to get the nurse or my GP to give it to me initially. Then I switched to injections, I can manage these myself now but had to be trained by a nurse how to self inject.
Best of luck, sorry I'm a bit of a dill today, golitho

SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 10/23/2009 4:41 PM (GMT -7)   
Thanks for the info golitho. I had heard it takes a few weeks - just double checking.
Im not sure how Im using this med - pen/syringe - will have to wait to figure this one out.
My Gastro is a bit shortcoming in her information and if it wasn't for the advice I receive from this forum I would be totally clueless.
Im sure I will be picking your brain again :)
Sorry you are having a bad trot there - hope the weekend is better for you.
Thanks again
Take care
Jo
Crohn's Disease
Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone
Bowel Resection Sept. 07


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 10/25/2009 5:02 PM (GMT -7)   
Hi Jo, If your gastro hasn't made an appt to show you how to inject I'd definately make an appt with your own doc to show you. Once you know how its relatively easy but its so expensive you don't want to lose a dose by knocking the end off. I did this with my second dose, it sprayed all over my bed. So after that I got the local nurse to inject me until I was confident enough to do it myself. This was with the pen applicator.
I even went to the ER once when I was given the injection by mistake and asked the nurse to help, they were brilliant, took me straight in, didn't have to wait or anything.
My hands aren't strong enough to get the caps off, thats why I changed to injection. I'm now fully independent.
Please ask away and don't forget slightest infection and straight to your doctor for anti biotics. Don't do what I did try and fight the flu on my own and ended up in hospital with double pneumonia. Now if I'm sick I go for anti virals or antibiotics, no mucking around! It took me over 10 weeks to recover from that pneumonia.
Best of luck, golitho turn

SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 10/25/2009 10:48 PM (GMT -7)   
Thanks golitho.
I hope to use the nurse my GP shares in her surgery and will be taking my Uni student nurse daughter with me so she can help when its all up to me.
Thanks for the heads-up re: infections - Im a bit of a plodder and let things get really bad before doing something about them - so appreciate the warning :).
Will keep you posted on when/if approved.
Thanks again mate!
Jo
Crohn's Disease
Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone
Bowel Resection Sept. 07


peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 10/26/2009 1:58 PM (GMT -7)   

Hi Jo,

I hope you don't mind me chiming in here on your conversation but having just come off Humira after a year I just wanted to confirm what golitho has said so far, the syringe is much better than the pen. I didn't like the fact that with the pen you click it and the needle and medication goes in within a few seconds (you don't know when). At least you can control the syringe and it's really very easy once your shown how to do it. Taking your daughter with you is a great idea. Unfortunately I have only sons and a husband and all didn't like the idea of sticking a needle in me bless them, in fact they didn't like being in the room either.  Mind you as I told them I wasn't that keen either. :-)   My specialist showed me how to do it and gave me a shoulder bag from Humira with a sharps container, wipes, travel pack, ice blocks and a diary to keep track of how your feeling over a 12 week period. All very useful so hopefully you will be given the same?

You should hear very soon if all paper work was put in last week so hang in there. .

ps. second remicade last week and the back is amazingly good, I even managed for a 'short while' to get on a kayak up the river at Huskinson at the weekend, it was the most wonderful thing to do and for the first time in 2 years I felt normal if only for a second instead of useless!  A very emotional day for me as I was so happy.  We have to grap the little things in life don't we. So I'm hopeful that I can do this again soon and if that's all I can do on the odd occassion that's fine with me... smilewinkgrin    Mind you I ached all over afterwards but it was worth it.

Take care and look after yourself.

Peggy.

 


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 10/26/2009 5:15 PM (GMT -7)   
Yeah I agree with Peggy abou the injections being easier to control, plus I don't get a bruise from them or the skin irritation I was getting with the pens.
Just heard my current flare is from the surgical menopause. Sudden drop to no estrogen is the culprit... what joy. I'm a mess, so its back to the gynae for some help if possible and in the mean time more pain meds, splints and rest. She won't put me on prednisone cos my white blood cells have plummeted.
Sorry to rave, feeling really depressed, golitho

SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 10/26/2009 7:48 PM (GMT -7)   

(((HUGS)))) for you golitho, Im sorry you are suffering so much lately, it can get very depressing feeling so bad all the time.

I wondered about menopause causing grief when it hits (although yours was surgically induced its due to hit me as Im 45 now UGH). Hopefully your Gyno can come up with a plan to make this better - although would this mean more medication?

Please let us know when you see your gyno and the outcome - will be thinking of you :-)

Peggy - thanks for chiming in I did'nt realise you had tried Humira or I would have picked both your brains :-)   Glad you are doing so well on the Remicade Peggy, you are right about snatching those moments of wellness and running with them (so to speak) hopefully you get more and more of these moments with the Remi's help smilewinkgrin

I heard from my Gastro's secretary today and I got approval smilewinkgrin

I have an appt. tomorrow to see her and discuss taking it - hopefully she has more information for me than she usually does - if not guess who will be back here picking both your brains again - sheesh smilewinkgrin

Will let you know how I go tomorrow.

Thanks again to you both

Jo (feeling nervous now lol)

 


Crohn's Disease
Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone
Bowel Resection Sept. 07


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 10/26/2009 10:59 PM (GMT -7)   
Best of luck. Go for the injection if you get a choice. Go armed with alist of questions, be prepared!!! Wasn't that the boy scout motto?
Hope it goes well for you, golitho

peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 10/27/2009 2:10 PM (GMT -7)   

Morning

I will be thinking about you today, as golitho said 'go armed with lots of questions' another helpful thing was having my husband (or anyone) by your side as sometimes we're still thinking about the answer to a question when they keep talking and you might miss something. 

Remember golitho and I are thinking of you and with you spirit if not in person.  You always know that on this forum you can ask as many questions as you like.

Take care, deep breath and all will be alright....this is a good thing.

smilewinkgrin Peggy

peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 10/28/2009 9:39 PM (GMT -7)   

Just popped on to see how it went yesterday?  Thought about you for most of the day as I've walked in those steps...Hopefully all over now and o.k about doing it yourself going forward?

NOTE: please be careful about visiting the suggested site suggested on several entries, could be a virus there, so many entries on RA for the same thing made me a little suspect on why we should all look there. I think  know the site and the content so not bothering, having said that we are allowed an opinon and you must make your own..

Have a great day.

Peggy smilewinkgrin


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 10/28/2009 10:04 PM (GMT -7)   

Hi Peggy and golitho,

I saw the gastro yesterday and it was just to pick the scripts up.

I then took them to the pharmacy and was told tomorrow and that they would call me. Well, I got a call on my way home to say that the starter kits were unavailable in pre-filled syringes and if I wanted to change to the pen (which were available)  that I would need to take the script back to Gastro for her to get reapproval - the Pharmacist actually spoke to my Gastro who told her if I brought it back to her I would have to wait as she has a lot more patients to see (she is such a charmer). skull

I had a mini anxiety attack at the thought of going back in to see her - it was hard enough getting there the first time - so I told the pharmacist that I would just wait for the syringes to become available and if she would'nt mind finding out when that was.

The Pharmacist rang back and had tracked a kit down and now it's Monday I pick it up and I have an appointment with my Dr.s nurse at 10am Monday.

Sheesh - what a bloody drama - Im hoping it's not an omen of things to come.

Could'nt face coming on here yesterday due to being so annoyed smilewinkgrin .

Thank you both for the well wishes, will keep you both up to date.

Thanks again

Jo


Crohn's Disease
Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone
Bowel Resection Sept. 07


peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 10/28/2009 10:21 PM (GMT -7)   

I'm so so sorry Jo cry    I can only imagine how you felt, I know the feeling of just wanting it all to go well and then something happens and it all falls to pieces. I believe you said you were from the blue mountains area before which must be different from my area when it comes to getting the drugs.  I know the problems I had most months was getting them to get it in on time.  Several times I would ring two days before needing to pick it up only to get there and they haven't done it OR it's been the end of the month and they thought they would wait until the beginning of the month just to make their books balance!!!! I used to have stand up fights telling them that these kinds of drugs can't just be taken as and when they want to give it, etc etc.  Anyway I founda chemist that didn't complain how much it cost them to get it in and always ordered it monthly regardless. Just thought I should forewarn you that you need to ring them days in advance to make sure they have it.

Your right to wait for the syringe on Monday, now try (and I know it's hard) to forget about it until then, believe me when I say when it's over with and you've done it, it will seem easy and not that much to worry about.

Take care and have a great weekend.

Peggy smilewinkgrin


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 10/29/2009 7:40 PM (GMT -7)   
Thanks Peggy, I am hoping that my chemist is not always going to be a drama - I did ask her if I will have trouble with repeats on this and she said 'no, not really' - not very re-assuring, so will plan ahead with this.
I am heading down your way again this weekend, staying at Kiama on Saturday night so we can get an early start at the 'fun park' the next day - we have had this planned for months and now I feel anxious about going. but cant disappointment my son as its his football end-of-season outing - oh well, will prop myself near the closest restroom :)
Hope you are doing well -
have a great weekend too
Jo

golitho - how are you feeling???
Crohn's Disease
Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone
Bowel Resection Sept. 07


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 10/29/2009 11:57 PM (GMT -7)   
Sorry youre getting the run around. My chemist is good, I have to order it in ahead and like Peggy give myself time so it can happily sit there in the fridge until I'm ready for it rather than the other way around. Check what time it will get in though with mine its often 10.30 - 11.00am ish for orders. Not to make you panic...
I'm in a bit of a steroid haze, had the jabs and I'm getting the flushes, knees and wrists are still swollen and sore but I think the general steroid wash has taken the edge of the extreme I was in. Taking panadeine forte too which helps. I just have too much on, this time of year seems to be reunion time plus end of year concerts, etc etc. I feel a bit stressed trying to cope with my kids social lives..stupid I know. Plus I'm feeling guilty over not doing the washing. I just have to snap out of this ridiculous mind set. I know it will all wait for me. Its like the logical part of my brain isn't connecting up to my Whirling Dervish side!!! Hows that? Been there before?
Are you going to Jambarooooo? My kids love that place, the smell of chlorine seems to be impregnated into their skin, but at least they don't get sick from it!!!
Peggy I can't believe how slack your chemist is! Country areas have there own time zones I guess but that would drive me crazy, hope you're both well, golitho

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 10/30/2009 1:43 AM (GMT -7)   
(Just chiming in)

I agree with what the others said about ordering it in advance. I order the new batch as soon as I inject my last syringe, so it's always there on time.

You should get it sooner than most of us: I've been told it comes from Sydney.

Have a fun weekend.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 10/30/2009 1:46 AM (GMT -7)   
golitho - you are so hard on yourself! I know its not easy to just leave everything till you are better but do try :)
Glad the 'jabs' are taking the edge off though. Im still in a pred haze and am now down to 25mg from 40 three weeks ago - feel zombified half the day - I remember when it made me whip through the housework like a machine - now I look around (like you) and think UGH!
Thanks for the chemist heads-up too - I am hoping they are on the ball with this!
Yes, we are going to Jamberoooo lol I didnt know you would have known about that - arent you from QLD - and they have the BEST funparks - although my days of enjoying a ride at one of them are well and truly over - and how I much enjoyed them :( Oh well - I will be the lady at Jamberoo covered from head to toe (darn MTX) and sitting near a restroom lol.
have a great weekend
Jo
Crohn's Disease
Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone
Bowel Resection Sept. 07


peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 10/30/2009 2:18 PM (GMT -7)   

Morning to you all,

I'm glad we've at least giving you the heads up as to what to look out for, mind you it may not be that way for you. A trip down to Kiama will do you good and the weather is wonderful.  I'm glad you gave me the heads up on the sun and Mthx drugs, I was only in an open top car the other day for no more than 10 minutes and I got burnt on both arms, fortunately not bad but noticeable as my sister told me off! She saw it on the skype camera. lol.  I now put lashings of cream on (not that I didn't before - just more of it). Gilitho I agree with Jo - don't be so hard on yourself, you can only do what you can when your body allows it, it's not the end of the earth if some jobs just don't get done. wink

I have to say that the remicade has certainly kicked in, the back is about 70% better, getting out of bed is almost normal now instead of hanging on to furniture and making those, as my husband fondly calls them "old lady noises" shocked . More to the point I feel better in myself, more positive in my head so that's good.  The ankle/foot is still the big problem but I'm hopeful in time that there will be some relieve there within the coming months.

Well must away, my lovely husband is taking me out for a drive and coffee in the sunshine.

Have a fun weekend, be kind to yourselves.

Peggy smilewinkgrin

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