Tag: Enbrel

No News-Saturday AS Awareness Day

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Faking being ok even though she told me not to

I’m seriously going to use the last three injections in my fridge!

Medical aid finally wrote today. I’d been waiting and waiting and had planned to email the nurse to ask what’s up.

Well, what’s up is NOTHING. Medical aid wants a letter of approval from the rheumatologists’ panel, and information from my doctor about what medication I’ve had and for how long. THEN they will decide if they approve or not.

This was not the email I thought I’d be reading when I opened it. I can’t even say I’m waiting again because I don’t know if the panel has met. I don’t know when they’ll meet. I don’t know why my doctor didn’t send the info together with the initial application anyway. I’m disappointed, folk. I hurt. I hurt. I’m getting even less sleep than ever. My neck, my shoulders hurt at night on top do the usual back and elbow pain… Today, I drove my daughter to her final Biology practical exam prep session and the entire way there and back I stopped myself from telling her that my foot hurt every time I moved it to brake or accelerate. The rheumatologist had felt it even before I consciously suffered from it-the damage and swelling in the front of my foot where it joins with my leg. I have NEVER had that area that sore before while driving, driving was actually ok for the foot and only bad on my SI joints and lower back.

Well, all bets are off. It’s like Satan has slowly been letting out bits of the fiery pit and sending the flames to me and now it’s getting hotter and I didn’t know it could. I know I always wonder how BAD someone’s pain is when they complain. It’s not like I can feel theirs and they can’t feel mine. Maybe compared to mine, it’s virtually nothing. Maybe it’s the same, but telling me you’re in pain ain’t enough. Is it keeping you awake? Can you ignore it and it remain in the background of your day?

I am suffering incredibly especially today after the long drive to the school (Let’s just say they were all shocked to find out where we live when my daughter mentioned it, and wondered about heavy traffic coming in), after waiting for class to finish, and the longer drive back. (Longer due to traffic.)

I already can’t sleep- pillow or none- because my neck and shoulders are fully in the mix now, not only my elbows, fingers and si joints.

I want to start treatment. I want to be better. I wanted to do a movement activity with my little ones this morning but couldn’t, I would take a step and leg would give way and an unexpected bullet of pain would streak through my SI joint and cause me to yell in pain.

I need the medication.

I don’t know when the panel will meet. I don’t know if they’ll agree that I need the mediation. I don’t know when my rheumatologist will do her part.

I just know that I feel like I’m losing my mind.

Please God, help me. I don’t want to buy a walking frame because of my leg that suddenly goes on a break when I need to use it. But I don’t want to get used to limping and shouting out unexpectedly. I don’t want that to be my norm. I’m too young for this. I can’t do this. I will go insane. So, please help me.🥹

And no, there’s a reason we are stopping the injections I was on. If I do end up desperate (I still have till Saturday for my “No injections of biologics till two weeks past surgery” rule to take effect, then I’ll inject and be worried that it will again reduce my immunity TOO much and I’ll catch a sickness and then I’ll get approval but be too sick /still sick and unable to start. Not that I know how soon my pharmacy will have it. They don’t stock biologics as not enough patients have them to justify them buying them without knowing there will be a patient who needs them. It took two weeks for the Enbrel to be in stock at my closest pharmacy.

What do I want you to be aware of?

The patients who are so desperately in pain, who have ‘failed’ their treatments and know that tomorrow will be even worse than today. I looked up voluntary assisted suicide on Sunday. Someone with AS did do it. He was in Canada. His loving wife cooked lovely soup for his last meal. I want you to be aware that there are some of us who are like that. So desperately aware that only death brings release- certainly not night time no matter how many pain killers are in our system.

I haven’t reached that stage yet. I’ve only failed one biologic. But I know the PAIN and wishing for death so it finally ends. We aren’t only the successful people like Whitey Basson for whom AS is almost meaningless. We are ones who feel like we are dying daily, (And whose lungs actually are.)

Enbrel, My Breast Lump and My Daughter’s Rib

Grace by any other name2 Comments

What I’ve read is true. Two days or so before your next injection, it wears off and you feel all the pain. I don’t even know when my next injection will be! It was meant to be today, and I was reminded of this sad fact by the deep ache I’ve woken up with.

So, I need to get better. And I also need to prove that I don’t have cancer as cancer patients aren’t allowed to be on biologics. Oh, I didn’t mention anything about cancer?

I’m one of those “Check your breasts!” fanatics. It saves lives. Early detection really is the best when possible. Even check just your skin for dimpling or ‘wrinkling’ or something different, even if inside you feel no change. That’s been my mantra for years and those who know me know that.

So, I was lying on my bed on Wednesday night and I decided to conduct a breast check. Went round my left breast first, all the way to armpit, and all felt normal. Went round to my right side and …”Hmm, what’s this?” It is very close to my breast bone (I know that’s not good) and it’s larger than two centimeters across. In a state of panicked, “I really hope I’m wrong, I really hope I’m not feeling something that’s not there,” I went out and asked my teenager, Eliora, if she could feel it. I did the same. Told her to start with the left and then the right. “Nooo!!! It’s not normal! I can feel something here!” I had a mammogram last year January and there were density changes and changes the radiographer thought and good were due to surgery but suggested I go back this year. Now, I’m not so sure they were purely from surgery but at the same time, I hope they were.

Husband arrived from business in Botswana that evening. I lay down, pressed each breast flat, and he couldn’t miss it. You can see ‘something’ raised on the lower side towards the bottom middle bottom of my breast.

I sent photos to my friend and she immediately saw the difference too. And we all know how notoriously bad photos are.

I have no clue what it is. Is it some weird muscle thing? Is it a cyst? Is it scar tissue from the two breast reductions I’ve had in my life? Is it a weird bony growth caused by AS? 🫣Is it a tumour? Is it necessarily malignant if it’s a tumour? Or will I escape for the fourth time with a growth that needs testing but will NOT be a malignant mass?

I do know how stressed a young girl was in university when she found a lump. Her boyfriend and I were visiting her room in res and she was frantic with worry. Hers was in the breast itself, she asked me to feel it and yep, it was there. She went to the varsity clinic and they told her to return two weeks later for a biopsy.

For two weeks I stressed and her boyfriend stressed and she stressed. It was horrible. I didn’t want her to suffer! And her boyfriend was shattered with worry while we waited. Thank God for her, it turned out to not be a malignant tumour. I think it was a cyst of some kind. The relief was beyond explanation. I felt like I could breathe properly again.

I will feel like that after my next mammogram and ultrasound. Maybe after biopsy if they deem it necessary. I did do an online booking at the hospital I did my last one at but they keep the “we will call you back with a date” thing as promised, so I will call. Or maybe I’ll see my gynae and do a full check THEN go? Or I’ll book the mammogram AND book my gynae and see which is available first. I think she’d wanted me to do mammogram every two years and pap every year. I’ll do both. But first, this bronchitis needs to be better so I don’t cough when they’re busy checking me.

Speaking of bronchitis. Someone not yet on oxygen in our ILD group got bronchitis which then turned to pneumonia and ended up in hospital on a ventilator and died scared me! I need to get better fully. And I need to be able to be still for the mammogram. So, here’s to speedy healing and to being able to breathe a sigh of relief. 🙏🏾

I won’t talk about the irony of how when we were choosing which of the two ‘most expensive biologic paying’ medical aid plans, I kept telling my husband that the most expensive one of the two had higher cancer coverage and allowed for treatment overseas so we should take it. After all, Ankylosing spondylitis patients have a higher cancer risk. So…Yes, I believe in natural as being best. But I will use it in conjunction with surgery. And once I know what kind of breast cancer it is, I WILL look for remedies from those who have used natural remedies who will have been at the stage I’ll be found to be at and we’re healed . If it’s cancer, I will remove the enemy lump. If necessary, I will remove the breast too and so reconstruction – as horrible as that itself is. And I think I’d need an implant (as safe as possible) as they can’t take a stomach muscle as mine are behind mesh. I know I can’t do all the natural remedies my slow leukemia friend is on. Broccoli etc that she uses for juicing are bad triggers for my IBS. So that’s the other thing. I can’t use things that will make me sick in this way. I do not need a bowel impaction- those are also dangerous.

But let’s not go there.

We will go for a mammogram and ultrasound and both will tell me that it’s so obviously a cyst or something that I won’t even need a biopsy. I don’t know how long off Enbrel I would need to be for biopsy. If urethral surgery was four weeks surely a biopsy will be some time too, if not as long. After all, there’s still risk of infection… Will find out when I know that I need it.

And I won’t! Right?💪🏾

Oh, and my daughter’s floating rib is still causing significant suffering. My husband has 75% off flight tickets and has been to parts of America for work maybe every years since 2013, so he is au fait with getting about. And doesn’t have AS pain to contend with with regards to flying. And he won’t need to wear a mask so he doesn’t catch sickness. He will take her to America if I can’t find a surgeon here who knows about floating rib syndrome.

Absolutely Fabulous?

Grace by any other name1 Comment

Am I starting to do absolutely fabulously? I’ve seen how many Enbrel (or any biologic) patients with AS don’t ever get full pain relief- ever even when it’s deemed to be helping. When the biologic is working, it means the pain has reduced and damage is slower. That’s all. And sometimes it’s not enough. Patients are “on treatment” but STILL can’t take walks because of pain, still can’t sit long, still can’t go for coffee with their friends. (Naming things real patients have mourned about.)

It’s hard.

But it’s also better.

I am on many painkillers including Tramadol. And I still have to go try the SI joint injections into both sides- when I’m better. So maybe there might yet be relief from those. Last time I thought there wasn’t any relief till it wore out and then I realised it had partly worked after all. It’s like being on a biologic. You can’t always tell because you’re still in pain.

I got distracted! But, it’s also better.

I sit here after two nights of no sleep. After a flare up that began on Monday but has totally disappeared!! It’s never gone away this fast. My last Enbrel injection was on Friday. I don’t know when I’ll be able to inject again thanks to this virus. I need this not only for my bones but for my lungs. It can help slow down the deterioration caused by AS.

Guys, I’m sorry I’m not as coherent as normal. I’m not feeling great at all. My chest is on fire and it feels like it’s crackling inside. But here’s my point.

Last night when I was on the phone with my husband (He’s always traveling) I told him that I thought I’d turned a corner regarding pain and that I think it’s the Enbrel. I had not had to take my Tramadol in the afternoon, in fact, I didn’t take any painkillers in the day time. I usually take three in the morning, sometimes one half way between morning and midday, another three after midday, and three in the evening. But when we spoke on the phone at around 7pm, I’d last had pain tablets in the morning. And I was going to only take the two lighter type of pain tablets- NOT the opioid.

In the night I kind of regretted not taking anything stronger, but the pain was bearable! And that was without the Trepiline I also take at night. I’d forgotten to take it and it makes me groggy if I take it late, unable to study my Bible before the children wake up. Which was ironic because I was so sick from this virus that I didn’t study my Bible anyway. But here’s the thing. I’ve only taken two pain tablets because of the ACHE I have. It’s not sharp. It’s not as if it’s bone grinding on bone like normal. It’s the level of pain I last had in my late 20s!! I feel weird! Like I’m floating! (That might be lack of oxygen talking, or my sinus infection but let’s not go there!)

I read memoirs by other sick people and so many family members and members of the public and church folk give money towards medical bills, travel costs etc and it’s lovely. But that doesn’t happen in Africa. I don’t go to the pharmacy each month and feel bitter about the costs. But reading those books does remind me of how different things are here. But more importantly, I HAVE received! Three people have given me money in the past year. I don’t know how to explain what this means. I don’t have anyone to come help me sweep or mop. So to have someone give money just randomly means the world to me and they will never be forgotten.

I may not have “all these people” giving but I know that those I give to right now, would give to me if they could. I know we love each other and feel terribly for each other. And I know they would come help me clean or put laundry away or cook. One even stayed away after wanting to specifically come and clean when she was sick because of how much she loves me. She gave me health, in a sense – a gift better than money- and at a time when we only knew of one bad lung function. It was in November. Maybe by then my lung diffusion capacity had already also decreased as found in January.

Each payment I make, I remember the money gift that came all the way from Kenya. Prayers do go far. Checking in makes me feel loved. But Enbrel costs money. And so today, I thank my faithful friend who regularly comments on my posts. She makes me feel heard when she does, it helps, knowing I’m not writing into air. And she sacrificed for me despite never having met me physically.

Today, I’m going to be real. Every kind of gift of love matters. But when I realised that though we increased our costs by going to a higher medical aid plan, we would ALSO need to pay R2000 per set of Enbrel injections, my heart sank. I looked at the pharmacist in despair. And she too was upset. Money counts. And knowing that someone gave gives me strength. I don’t despair for long because I remember the gifts. God will provide. He’s already provided sisters who love and check and ask and worry. And money.

That’s the reality. Prayer only goes so far. My feeling thankful despite sickness won’t pay the medical costs. And so, today I focus on money. Not the one I’m lacking. But the one I was given. When I pay, I breathe a prayer of thanks for Flydah, Abby’s mama, who didn’t let borders get in her way. And I pay pretending she’s right there with me.

Let’s see how long this reduced pain lasts. And let’s hope I get better quickly so I can keep injecting. Find someone near you who needs the same and give your time or your money. You know you’ll feel good and I know God will be feeling warmhearted over you when you do. You might be the one to help someone get over their despair.

Now Injection This Week

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I still haven’t recovered from the infection to the point where the rheumatologist thinks it would be safe to unleash an immunosuppressant on me. “No redness and no swelling.”

Instead, I have white. The hole is no longer producing the stuff you’d assume would cause the current whiteness. Pus. I hate the word. Sorry for grossing you out! The joke itself has not closed up.

And I definitely do not have “no swelling.”

In fact, pain has increased.

Normal finger

Not so normal finger.

I really woke up hoping for the best today. Hoping to inject. Looking FORWARD to the stomach pain and bloating.

I always understood intellectually the cancer survivors who’d write how distressed they were that their white blood cells weren’t a high enough number for more chemo. A count reduced by the very chemo! Thats where I am. Enbrel has probably suppressed my ability to fight. But I desperately want it so we can know the way forward sooner rather than later.

I’m disappointed. Sad. Tired. I want to be pain free. I don’t want to get up from sitting on the toilet, or stand up straight from bending over the bin and scream from pain from those movements as what happened today. (Hopefully that’s the last time!)

I just want a bit of hope. Please 🙏🏾

My Blessings

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One of the AS patients who died this year had a wonderful mother. Yes, she didn’t see how bad things were, thought her daughter had to just buck up and get on with it till she realised she was in liver failure, but in general, she was a loving and supportive mom and an amazing grandmother.

It made me glad that my mother figure (Step mom in law) is far away. She can’t see what I go through. She already feels so desperately worried the few times I mention it that I don’t ask how she is on my worst days because I know she will ask how I am.

Then I realized that though my biological mother wasn’t the best, that I didn’t have any recent heartwarming memories, I DO have those who care about me. Who contact me purely to check on me, not to use me. Those who send messages because they love me, not because they want something from me.

I see it in their actions. In the way they study the various conditions my children have, in how they share videos that remind them of my children, in how they try give (money) because they aren’t here to do (anything for me.)

They are my blessings.

I am thankful for every true hearted query. For every well thought out sentiment. For every, “Oh no, that means you’ll have a terrible day” after I relate something I did that will tax me or have bad consequences.

Like allowing my daughter to sit on my lap for a very long time as she made me read two books to her despite how the enthesitis in my pelvis has been raging.

My husband was saying this morning that he’s got grey hair because of me. In the past, I was sick but it was random issues, random surgeries and we were en route to diagnosis and HEALING. But now, now he knows there’s no cure at all. There’s no healing. And it gets worse… It’s knowing that we are trying treatments. Trying. We don’t even know if this Enbrel is the magic bullet or if we will have to keep trying and failing while the disease keeps on stealing my mobility from me.

It’s scary.

But we have our blessings. And we are thankful for them.

Too Many (for AS patients)

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Alright. This is for AS patients who are still actively trying to figure out if they’re on the right biologic. Those who are new and not sure of what they’re experiencing is normal, and don’t know if they’re the only ones dealing with random issues.

This is my bit to speak for all the patients who write in groups that the medication is working BUT the side effects are unsustainable. Here’s why it’s hard for ME. This post is for all the people who wonder what actually CAN happen?

So, Enbrel is not going to leave me unmarked -internally. It’s a lot going on and I have not been telling anyone the extent to which it’s impacting me.

Damned if you do, extra damned if you don’t.

Fatigue. AS already is a disease marked with extreme exhaustion. The day after my injection, I suffered a lot but today that aspect is gone.

Just know that some problems you might have had before starting Enbrel (or any other biologic) can spring up worse and more often. I’ve had a problem that began 24 years ago and was bad enough for me to get help many times, but no real answer except to be told it’s going to stay with me forever and will keep flaring up, and to be told only total deep surgical excision would get rid of the problem. (Hint- staphylococcus bacteria is sometimes impossible to get rid of)

Just know that sinusitis can do weird things when you have Enbrel in your system. Like your nose pouring out what might as well be water uncontrollably.

Just know that you can have gastrointestinal problems that also last days. Think the opposite of the IBS I have. (Mine is constilation dominant.)

I don’t know, warriors. They say side effects get worse the more you have it in you. I don’t know what that will look like for me. I don’t know if I’ll settle down instead. I’d like to give this a real chance to work.

Back to the staph issue and what the dermatologist said about deep surgery…It would mean I’d also need reconstructive surgery and skin grafts given how widespread the problem is.🥹 And you have to quit your biologic if you’re due to have surgery. So even if I was contemplating it, stopping AGAIN before Ive found out it if it works is not something I’d do unless it’s a matter of life and death or permanent disability. We need to know if this is even the right treatment.

It’s one thing to be told, “I had to try so many meds before I could find one that didn’t impact me” to actually live it. How bad is bad enough to try something else? And now I can understand the patient whose rheumy changed her meds because of her side effects, a change which which made her upset as she felt the biologic was helping the AS so would have preferred to weather the side effect stork and control the Azs. Uncontrolled AS is awful. Worse (for us) than the side effects sometimes. But the side effects can kill. And maybe the rheumy knew what was ahead…

And so… we walk on blindly. Nobody who has lived our specifics, nobody we tell our specifics to. Just hoping for a break.

That’s AS reality when your disease is not yet under control and you’re still new to a biologic.

On the positive side, my skin hasn’t reacted to the injection. No site reactions. Some people have to quit because of them as they spread and become thick, permanent and get painful and… So though I almost forgot to add it in, it’s important to note. At least that’s not a possibility I’m dealing with.

Better Injection!

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I’m so, so thankful! Last week, I had that horrible reaction not even an hour after injecting myself. I brought the injection day forward so that I’d hopefully be ok by Sabbath – my poor middle two were extremely upset at not going to church.

I don’t get anything. No reaction. No welt. No diarrhea. No excruciating burning pain! Nothing! I don’t know what tomorrow will hold, but I know that today held ME!

AND I had a whole hour of no pain. I could not only tell my middle two what occupational therapy exercises to do for their core, but I joined in with them. My sweet eight year old asked in shock, “MOMMY!! What are you DOING!!??”

Priceless!

Enbrel number 3. Done and dusted. First time injecting into my belly. I’ll be better at it next time.

It is HERE!

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It has been such a long wait! For something that I don’t even know will help! But, here it is. My Enbrel. After Discovery refused to find it because I’m not on the top two (read-most expensive) plans, we asked the doctor and nurse to proceed with an appeal (as they’d said the next step would be).

Next thing, I get a call from the rheumatologist’s offices saying that we’ll, an appeal would not work because of the plan I’m on.

“So, why? Why did we even begin the process if you already know the outcome? Why did you make me wait when you knew I was waiting for nothing!?” I wanted to scream.

But, I don’t scream.

She then proceeded to tell me about a cheaper drug than the Enbrel the doctor had said would be best to start with.

Again, my head spun. “Do you realize that none of you ever told me the cost anyway and you’ve always all assumed I won’t afford it? But if this is the best, then I might as well try! Plus it might not work anyway, or the side effects might be so awful that I’ll have to quit and try this other one. So, let’s just bring out the big guns before trying something less suitable. Why are you patronizing me by not giving me all the costs and siting for ME to tell you I can’t afford it?”

All this time, I’d been told by a patient that they are paying R5600 per injection. But when I asked for the cash price, it’s R5200 for the 50mg injection. (You can get a 25mg one but I was prescribed the larger dose.)

We can make a plan till next year. It will require lots of sacrifice in other areas, but it’s much less than I’d been told. So I told the office manager that we’d do it cash for now.

I don’t know. I just don’t like the way things have been done. The very first time I saw the doctor, she said we’d apply for the meds. And if they said no, we’d appeal, and then if no, apply for ex gratia funding from them.

Suddenly, all that has fallen by the wayside now that it’s time for her to write an appeal… I just don’t feel good. It’s like I was being fooled with empty promises. We’d already planned to take out a loan to fund treatment- don’t ask me how we’d repay! But they never asked. Just went an a path of assumptions and made me wait and fill in forms for no reason.

Oh well. Anyway! On Tuesday, I ordered the injections from Dis Chem and received the call saying they were there yesterday.

Having done IVF before, I know how to inject myself so I just asked the Enbrel nurse about what to expect.

1. If I have a skin reaction, no matter how mild it is, I should go to the pharmacy. If I ignore it, it maybe get much worse the next day and become a runaway fire.

I did get a minor reaction so I went.

Right now, it’s swollen but not red anymore. It’s a wider patch that has swollen than yesterday but no pain and itching.

2. I might get a headache.

I woke up with one but my life is a mess with sinusitis and hormone issues so who knows. Either way, it’s a very mild headache.

3. Extreme fatigue

I’m starting to feel it now, 21 hours later.

4. Some people said they don’t feel like themselves.

I feel like me. So far…

So, we wait and pray and hope. Not only for it to work and to work quickly, but for the windows of heaven to shower us so we can afford all our expenses. I know He is faithful. Two friends have sacrificed a lot already without even knowing how bad things are-one all the way in east Africa! I’m already going to cancel my pulmonologist visit due to low funds. We can’t do it all. Unplanned glasses, vision therapy, having to pay for the Enbrel ourselves, food, mortgage payments, my dad’s electricity, son’s driving lessons and car hire for the test.

Let’s see, people.

Watching..and praying.🙏🏾