r/iddnursing

▲ 3 r/iddnursing+1 crossposts

Osteoporosis Drug Holidays (Bisphosphonate Drug Holidays Explained)

This comes up a lot with individuals who are on osteoporosis medications like alendronate (Fosamax), risedronate (Actonel), ibandronate (Boniva), or zoledronic acid (Reclast) — providers sometimes talk about a “drug holiday”, and staff/families think the medication was discontinued by mistake.

It’s actually often intentional.

What Is a Drug Holiday?

drug holiday is when a provider intentionally stops an osteoporosis medication for a period of time after several years of treatment, then may restart later.

This is most common with bisphosphonates because these medications stay in the bone for years even after stopping them.

So the medication keeps working even when it’s not being taken.

Common Bisphosphonates

These are the meds most associated with drug holidays:

  • Alendronate (Fosamax)
  • Risedronate (Actonel)
  • Ibandronate (Boniva)
  • Zoledronic acid (Reclast)

Denosumab (Prolia) is different — it usually should NOT be stopped suddenly without a plan.

Why Do Drug Holidays Happen?

Bisphosphonates are effective, but long-term use has been associated with rare side effects like:

  • Osteonecrosis of the jaw (ONJ)
  • Atypical femur fractures
  • Over-suppression of bone turnover
  • Esophageal irritation (oral meds)

Because the medication stays in bone for a long time, providers sometimes:

  • Treat for several years
  • Stop medication for a period
  • Monitor bone density
  • Restart later if needed

Typical Timeline (General Idea)

This varies by provider and patient risk, but commonly:

Medication Typical Treatment Before Holiday
Alendronate 5 years
Risedronate 5 years
Ibandronate 3–5 years
Zoledronic acid 3 years

After that, provider may consider:

  • Drug holiday
  • Continue therapy if high fracture risk
  • Switch medications
  • Repeat DEXA scan
  • Monitor bone density

Who Might Continue Without a Drug Holiday?

People at high fracture risk may stay on therapy longer:

  • History of fractures
  • Very low bone density
  • Chronic steroid use
  • Wheelchair bound
  • High fall risk
  • Advanced age
  • Severe osteoporosis
  • Neuromuscular disorders
  • Long-term seizure medications
  • Non-ambulatory individuals

This is very relevant in the IDD population.

Monitoring During a Drug Holiday

During a drug holiday, providers often monitor:

  • DEXA scans
  • Calcium
  • Vitamin D
  • Fractures
  • Height loss
  • Back pain (possible compression fractures)
  • Mobility changes
  • Falls
  • Bone pain

If bone density worsens or fractures occur, medication may be restarted.

Important Nursing / IDD Considerations

In IDD populations, many individuals have high osteoporosis risk due to:

  • Anticonvulsants
  • Limited mobility
  • Wheelchair use
  • Low vitamin D
  • Poor nutrition
  • Tube feeding
  • Long-term steroids
  • Low body weight
  • Down syndrome
  • Cerebral palsy
  • Hypogonadism
  • Thyroid disorders

So sometimes providers do NOT give drug holidays in these populations because fracture risk is high.

Very Important Note About Prolia (Denosumab)

Prolia is NOT a bisphosphonate and should not be stopped without a plan.

Stopping Prolia suddenly can lead to:

  • Rapid bone loss
  • Rebound vertebral fractures
  • Multiple spinal fractures

If Prolia is stopped, providers often:

  • Transition to a bisphosphonate
  • Monitor closely

This is very important and often misunderstood.

Quick Summary

Drug holidays are usually considered for:

  • Alendronate
  • Risedronate
  • Ibandronate
  • Zoledronic acid

Usually after:

  • 3–5 years of therapy

Not usually for:

  • Prolia (denosumab)
  • High fracture risk patients

Monitoring includes:

  • DEXA scans
  • Vitamin D
  • Calcium
  • Fractures
  • Falls
  • Height loss
  • Back pain

IDD Nursing Tip

If you see:

  • Osteoporosis medication stopped after years
  • No new medication started
  • Provider note mentions “drug holiday”

It may be intentional, not an error — but it’s always good to confirm.

Also important to track:

  • Last DEXA scan
  • Vitamin D levels
  • Calcium intake
  • Fall risk
  • Mobility changes
  • Fractures
  • Dental issues (ONJ risk)
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▲ 9 r/iddnursing+2 crossposts

Donating Kate Farms 1.4 formula - strawberry flavor

I have 7 cases of Kate Farms strawberry flavor 1.4 (not pediatric) that I would like to donate.

I have Crohn's and was on a very restricted diet for a while that included this and am no longer on the diet. It is pretty caloric so I don't want it now that I'm eating regularly again.

Most have expiration dates of Oct. 2026 but a couple are Sept. 2026. I'm in Rhode Island and would prefer to meet someone somewhere rather than ship, if possible. I will try to cross post to reach more people that may want this. Message me if interested.

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u/threebythesea — 4 days ago
▲ 15 r/iddnursing+1 crossposts

Tymlos vs Forteo vs Evenity vs Raloxifene vs Risedronate — what’s the difference?

If you’ve been told you need osteoporosis treatment, the options can feel overwhelming. These meds fall into different categories and are used for different situations.

Here’s a clear breakdown

Tymlos (abaloparatide)

  • Anabolic
  • Builds new bone
  • Up to 2 years
  • Daily injection

Forteo (teriparatide)

  • Anabolic
  • Builds new bone
  • Up to 2 years
  • Daily injection

Evenity (romosozumab)

  • Dual
  • Builds bone + slows breakdown
  • 12 months
  • Monthly injections

Raloxifene

  • SERM
  • Mimics estrogen to reduce bone loss
  • Long-term
  • Daily pill

Risedronate

  • Bisphosphonate
  • Slows bone breakdown
  • Long-term
  • Weekly or monthly pill

1. Bone-building meds (Tymlos & Forteo)

These are anabolic, meaning they actually create new bone.

Best for:

  • High fracture risk
  • Prior fractures
  • Severe osteoporosis

Consider:

  • Daily injections
  • Limited to ~2 years
  • Need follow-up medication after

2. Evenity (build + protect)

Evenity does both:

  • Builds bone
  • Slows breakdown

Best for:

  • Very high fracture risk
  • People needing faster improvement

Consider:

  • Monthly injections
  • 12-month limit
  • Heart/stroke risk warning

3. Risedronate (classic first-line option)

A bisphosphonate that slows bone loss.

Best for:

  • First-line treatment for many people
  • Preventing further bone loss
  • Long-term maintenance after stronger meds

Consider:

  • Must take on empty stomach
  • Stay upright after taking
  • GI side effects possible

4. Raloxifene (estrogen-like option)

A SERM (Selective Estrogen Receptor Modulator)

Best for:

  • Postmenopausal women
  • Lower fracture risk cases
  • Those who may benefit from breast cancer risk reduction

Consider:

  • Doesn’t build bone (prevents loss)
  • Risk of blood clots
  • Can worsen hot flashes

Which is “strongest”?

Not a perfect comparison, but generally:

Evenity → fastest + most aggressive

Tymlos/Forteo → strong bone-building over time

Risedronate → maintains bone / slows loss

Raloxifene → milder option for specific cases

Treatment sequencing (super important)

A lot of people don’t realize this:

Stronger meds are often followed by maintenance meds

Examples:

Tymlos → then risedronate

Evenity → then bisphosphonate

Forteo → then antiresorptive

Without follow-up, bone gains can be lost

Side effect overview (real-world)

Tymlos / Forteo:

  • Dizziness
  • Increased heart rate
  • Injection site issues

Evenity:

  • Joint pain
  • Injection reactions
  • Cardiovascular warning

Risedronate:

  • Heartburn / GI irritation
  • Must follow strict dosing instructions

Raloxifene:

  • Hot flashes
  • Leg cramps
  • Blood clot risk

How doctors usually decide

It depends on:

Fracture risk (low vs high vs very high)

Age and menopause status

Heart history (important for Evenity)

Ability to tolerate pills vs injections

Insurance coverage

Bottom line

Tymlos/Forteo/Evenity = build bone (used for higher risk)

Risedronate = maintain + prevent loss

Raloxifene = selective option for certain women

Most people end up on more than one of these over time

Curious what others experienced:

  • Which medication were you started on and why?
  • Did you switch at any point?
  • How were the side effects?
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u/Silly-Boysenberry719 — 7 days ago
▲ 5 r/iddnursing+1 crossposts

A Clinical Study for Adults With PWS Is Now Open in Australia

Do you, or an adult you care for (aged 18–65), have Prader–Willi syndrome (PWS) and experience hyperphagia?

Leapcure is helping connect families to a clinical trial in Australia evaluating an investigational oral medication being studied for its potential impact on hyperphagia and various associated behavioural disorders in individuals with PWS.

At Leapcure, our team works one-on-one with carers to help you understand the study, answer your questions, and guide you through next steps. If your loved one may qualify, we can also help connect you with a participating study site.

To learn more, take our quick survey at https://lpcur.com/rpraderwilli-bmb, and a member of our team will follow up with you.

u/LeapcureAdvocacy — 3 days ago

Osteoporosis medications explained – Alendronate vs Prolia vs Reclast vs Forteo

I see a lot of confusion about osteoporosis medications, especially in residential and long-term care settings. These four get mixed up a lot, but they are actually very different.

Here’s a simple breakdown.

1. Alendronate (Fosamax)

Type: Oral bisphosphonate
How often: Weekly
What it does: Slows bone breakdown

Important administration instructions:

  • Take first thing in the morning
  • Take with full glass of water
  • Do NOT lie down for 30 minutes
  • Do NOT eat for 30 minutes
  • Must stay upright
  • Can cause esophageal irritation

Common issues:

  • People can’t follow the instructions
  • Swallowing problems
  • GERD
  • Staff forget upright rule
  • Residents refuse weekly meds

This is usually first-line treatment for osteoporosis.

2. Prolia (Denosumab)

Type: Monoclonal antibody injection
How often: Every 6 months
What it does: Slows bone breakdown

Important things to monitor:

  • Low calcium
  • Muscle cramps
  • Jaw pain
  • Dental issues
  • Skin infections
  • Hip or thigh pain

Very important:
Prolia should not be stopped suddenly without another medication because bone loss can happen quickly.

This is often used when people cannot tolerate oral bisphosphonates.

3. Reclast (Zoledronic Acid)

Type: IV bisphosphonate
How often: Once yearly IV infusion
What it does: Slows bone breakdown

Common side effects after infusion:

  • Flu-like symptoms
  • Fever
  • Body aches
  • Fatigue
  • Headache

Usually given:

  • Once per year
  • Sometimes every 2 years depending on situation

This is often used for people who:

  • Cannot take oral meds
  • Have swallowing problems
  • Are non-compliant with weekly meds
  • Live in residential settings
  • Have GERD

4. Forteo (Teriparatide)

Type: Daily subcutaneous injection
How often: Daily
What it does: Builds new bone (very important difference)

Most osteoporosis meds slow bone loss, but Forteo actually stimulates bone growth.

Usually used for:

  • Severe osteoporosis
  • Multiple fractures
  • Very low bone density
  • Long-term steroid use
  • High fracture risk

Usually limited to 2 years of use, then switched to another medication like Prolia or bisphosphonate.

Quick Comparison Chart

Medication How Often Route What It Does
Alendronate Weekly Oral Slows bone loss
Prolia Every 6 months Injection Slows bone loss
Reclast Yearly IV Slows bone loss
Forteo Daily Injection Builds new bone

Very Simple Way to Remember

  • Alendronate → Weekly pill
  • Prolia → Injection every 6 months
  • Reclast → IV once per year
  • Forteo → Daily injection that builds bone

Who I Usually See On Each

Alendronate

  • Independent individuals
  • Can follow instructions
  • No swallowing issues

Prolia

  • Group home residents
  • People who can’t take oral meds
  • Long-term osteoporosis management

Reclast

  • People with compliance issues
  • Swallowing problems
  • GERD
  • Residential settings
  • Yearly infusion easier

Forteo

  • Severe osteoporosis
  • History of fractures
  • Very high fracture risk
  • Often followed by Prolia or Reclast after therapy

One Important Osteoporosis Tip

Many people on osteoporosis meds should also be on:

  • Calcium
  • Vitamin D
  • Weight bearing activity
  • Fall prevention program

Because preventing falls is just as important as treating osteoporosis.

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u/Silly-Boysenberry719 — 11 days ago

Medications that can Contribute to Osteoporosis (not just Steroids)

A lot of people think only steroids cause osteoporosis, but there are actually several medication classes that can contribute to bone loss.

Common medications that can reduce bone density:

  • Steroids (prednisone)
  • Anticonvulsants (phenytoin, phenobarbital, carbamazepine, valproate)
  • Proton pump inhibitors (omeprazole, pantoprazole)
  • SSRIs (some evidence)
  • Antipsychotics
  • Depo-Provera
  • Aromatase inhibitors
  • Some thyroid medications if dose too high
  • Heparin (long-term)
  • Loop diuretics (Lasix)

In IDD and residential settings, I most commonly see osteoporosis in people on:

  • Long-term antipsychotics
  • Long-term seizure medications
  • PPIs for years
  • Steroids
  • Limited mobility
  • Low vitamin D
  • Poor nutrition

So when someone has osteoporosis in a group home, it’s usually multiple risk factors, not just age.

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u/Silly-Boysenberry719 — 9 days ago

Syndrome of the Week: Turner Syndrome — More Than Short Stature

Overview

Turner syndrome affects females and results from partial or complete absence of one X chromosome.

Key medical risks

  • Congenital heart defects
  • Infertility
  • Thyroid disorders
  • Hearing loss

Behavioral & functional traits

  • Average intelligence (often)
  • Challenges with spatial reasoning
  • Social immaturity in some individuals

DSP care considerations

  • Support hearing evaluations
  • Encourage independence with support for executive functioning
  • Monitor for fatigue or cardiac symptoms

Nursing priorities

  • Cardiac screening history
  • Thyroid monitoring
  • Hearing assessments

Discussion

Have you seen subtle learning differences affect independence?

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u/Silly-Boysenberry719 — 10 days ago

Why Are IDD Nurses Always an Afterthought?

Let’s say something that a lot of IDD nurses feel, but don’t always say out loud:

Nurses are often one of the last groups considered in agency decision-making.

Schedules change. Policies roll out. Trainings get assigned. Systems get implemented.

…and nursing finds out after the fact.

But here’s the disconnect:

Nurses are the ones responsible when things go wrong.

We are expected to:

  • Catch clinical decline early
  • Prevent hospitalizations
  • Interpret vague symptoms
  • Support DSPs in real time
  • Answer for outcomes during reviews

So how does it make sense that we’re not consistently included at the front end?

What happens when nursing is an afterthought:

  • Medical risks get overlooked in planning
  • Policies don’t reflect real clinical workflows
  • DSPs don’t get the right level of training
  • Follow-up systems fall apart
  • Preventable issues escalate

This isn’t about ego—it’s about safety

IDD care is not just social support. It is medically complex, often subtle, and high-risk when misunderstood.

When nursing input is missing, the system becomes reactive instead of preventative.

What needs to change:

Nurses need to be:

  • Included in program and policy development
  • Involved in training design—not just delivery
  • Consulted before clinical systems are implemented
  • Recognized as leaders—not just support staff

And nurses need to step into that role, too

This isn’t just on agencies.

We have to:

  • Speak up in meetings
  • Offer clinical insight proactively
  • Take ownership of education and systems
  • Advocate for our role beyond “tasks”

Final thought:

If nursing is brought in last, care will always be catching up instead of staying ahead.

And in IDD—that’s where risk lives.

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u/Silly-Boysenberry719 — 5 days ago

If Training Isn’t Documented, It Didn’t Happen

OPWDD requires staff to complete and maintain competency in specific trainings to ensure safe, effective care.

Required trainings often include:

• Medication administration (AMAP)

• Abuse & neglect prevention

• CPR & First Aid

• Infection control

• SCIP/R behavioral supports (if applicable)

• Fire safety & emergency procedures

Compliance risks include:

• Expired certifications

• Missing training records

• Staff performing tasks without required training

• Lack of competency validation

Training isn’t just a requirement — it’s what keeps people safe.

Reflection Question: How does your program track and verify staff training compliance?

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u/Silly-Boysenberry719 — 8 days ago

IDD Nurses Need to Step Up as Educators

There’s something happening in the IDD field that we don’t talk about enough:

Too often, medical training is being delivered by people who are not medical professionals.

And that’s a problem.

In many agencies, DSPs are being trained on:

  • Seizure recognition and response
  • Aspiration risk and feeding protocols
  • Infection prevention
  • Medication administration concepts

…by individuals who don’t have clinical training or real-world medical accountability.

That’s not a knock on those professionals—it’s a gap in how we’re using nurses.

IDD Nurses Are Not Just Task-Oriented Staff

We are:

  • The clinical safety net
  • The ones interpreting subtle changes in condition
  • The ones responsible when something is missed

So why are we not consistently leading education?

Here’s the reality:

When training is disconnected from clinical judgment:

  • Early warning signs get missed
  • Staff follow steps without understanding why
  • Preventable hospitalizations still happen

This is where IDD nurses need to step up

Not by waiting to be asked—but by actively taking ownership of education in our agencies.

That means:

  • Building structured trainings
  • Simplifying complex medical concepts for DSPs
  • Reinforcing why protocols matter
  • Creating tools that staff can actually use in real time

Because good training isn’t just information…

It’s what prevents:

  • Aspiration events
  • Missed seizures
  • Untreated infections
  • Severe constipation
  • Dehydration

(Yes—the Fatal Five.)

If we don’t lead this space, someone else will.

And the quality of care will reflect that.

IDD nursing isn’t just about documentation and oversight.

It’s about translating clinical knowledge into everyday care.

Final thought:

If you’re an IDD nurse, you are already an educator—whether your title says it or not.

The question is: Are you using that role intentionally?

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u/Silly-Boysenberry719 — 7 days ago

Teaching DSPs Isn’t About Information—It’s About Translation

One of the biggest mistakes I see in IDD settings:

Nurses teach the way they were taught instead of teaching in a way DSPs can actually use.

DSPs are not nurses—and they’re not supposed to be.But they are the ones at the bedside 24/7.

If our teaching doesn’t stick, care breaks down fast.

Tips for Nurses Teaching DSPs

1. Stop teaching “what”—start teaching “why.”

If staff only memorize steps, they freeze when something changes. When they understand why, they adapt.

2. Use real scenarios—not textbook language

Skip:

“Monitor for signs of aspiration”

Say:

“If they cough while eating or sound wet after drinking—stop and tell someone immediately.”

3. Teach in small pieces

No one learns from a 1-hour info dump. Break it into:

  • 5–10 minute focused teaching
  • Repeat it often
  • Reinforce during real care moments

4. Show, don’t just tell

Demonstrate:

  • Positioning
  • Feeding pace
  • Equipment use

Then have them teach it back to you.

5. Normalize questions

If staff are afraid to ask questions, they will guess. And guessing in healthcare is where mistakes happen.

6. Connect everything to real risk

Staff engagement changes when they understand:

“This is how someone aspirates.” “This is how constipation turns into an emergency.”

Now it matters.

7. Don’t confuse sign-offs with competency

A signature doesn’t mean understanding. Watch staff actually perform the task.

8. Reinforce in the moment

The best teaching doesn’t happen in a classroom. It happens:

  • During meals
  • During med pass
  • During routine care

The reality:

Most preventable incidents don’t happen because staff “weren’t trained.”

They happen because:

  • Training didn’t stick
  • It wasn’t practical
  • Or it wasn’t reinforced

Good teaching = safer people

When DSPs understand what they’re doing and why:

  • They catch changes earlier
  • They respond faster
  • They prevent escalation

Final thought:

If you’re an IDD nurse, you’re not just providing care.

You’re shaping how care is delivered when you’re not there.

Teach like it matters—because it does.

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u/Silly-Boysenberry719 — 6 days ago

Things DSPs do that stress nurses out (but no one says it)

I’m gonna say this respectfully because I know DSPs are overworked too… but some of these things make nursing 10x harder:

  • Meds being poured before the nurse reviews changes
  • “They’ve been like that all day” but no one documented or called
  • Vitals taken once and never rechecked
  • Reporting vague symptoms like “they’re off” with no details
  • Not following positioning or aspiration precautions consistently

None of this is about blaming—it’s a systems issue. But these are the exact things that turn small problems into hospitalizations.

Curious—what would DSPs say nurses do that frustrates them?

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u/Silly-Boysenberry719 — 5 hours ago

What doctors should know about SDMC proceedings (especially in IDD settings)

I’m an RN working in IDD, and one thing I don’t think gets explained well to physicians is how the Surrogate Decision-Making Court (SDMC) actually works in practice.

For anyone unfamiliar, SDMC is used in NY when a person with intellectual/developmental disabilities doesn’t have capacity and doesn’t have an available surrogate to consent for certain medical decisions.

A few things I wish more providers understood:

  • Your recommendation carries a lot of weight. The committee heavily relies on the clinical justification you provide. If it’s vague or incomplete, it can delay decisions.
  • Clarity matters more than length. “Patient needs procedure” isn’t enough. They’re looking for:
    • diagnosis
    • why the treatment is necessary
    • risks/benefits
    • what happens if it’s not done

The Certificate of Medical Need (this is where things often get stuck)

One of the biggest hang-ups I see is the SDMC Certificate of Medical Need form that the physician completes.

A few practical points:

  • This form is essentially your formal clinical justification for the request
  • It needs to clearly explain why the intervention is necessary—not just what is being requested
  • If it’s incomplete, vague, or missing key details, the case can be delayed or sent back

Helpful to include:

  • The specific condition/diagnosis
  • Why this treatment/procedure is indicated now
  • Risks vs. benefits
  • What could happen if the treatment is delayed or not done
  • Any less restrictive alternatives considered

From the agency side, we’re often chasing this form down or sending it back for clarification—so a thorough first pass saves a lot of time for everyone.

  • Timing can be frustrating—but it’s structured. From the outside it can feel slow, but there’s a legal process being followed. Planning ahead helps avoid last-minute issues.
  • This often comes up with things like:
    • dental procedures under general anesthesia
    • psychotropic medications
    • invasive or elective procedures
  • Communication with the RN/agency is key. We’re usually coordinating the paperwork, scheduling, and follow-up—so when we’re aligned, the process goes a lot smoother.

I think there’s a big gap between how this process looks on paper vs how it actually plays out in real life.

Curious—have any providers here gone through SDMC and found it confusing?

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u/Silly-Boysenberry719 — 5 hours ago

Antipsychotics and Osteoporosis

Long-term antipsychotic use can contribute to osteoporosis, especially in individuals with developmental disabilities.

Why antipsychotics affect bones:

Some antipsychotics increase prolactin, which can reduce estrogen/testosterone levels, which can lead to bone loss.

Antipsychotics most associated with increased prolactin:

  • Risperidone
  • Paliperidone
  • Haloperidol
  • Some older antipsychotics

Risk factors for osteoporosis in individuals on antipsychotics:

  • Long-term use
  • Limited mobility
  • Poor diet
  • Low vitamin D
  • Anticonvulsants
  • Steroids
  • Low body weight
  • Smoking
  • Little sun exposure

This is why many individuals in group homes end up on:

  • Calcium
  • Vitamin D
  • Prolia
  • Reclast
  • Alendronate
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u/Silly-Boysenberry719 — 4 days ago